An Overview of the Dementias

What is Dementia?
Dementia is the loss of intellectual functions (such as thinking, remembering and reasoning) of sufficient severity to interfere with a person's daily functioning. It is not a disease in itself, but rather a group of symptoms which may accompany certain diseases or physical conditions. The cause and rate of progression of dementias vary. Some of the better known diseases that produce dementia include Alzheimer's Disease, multi-infarct dementia, Huntington's Disease, Pick's Disease, Cruetzfeldt-Jakob Disease, and Parkinson's Disease. Other conditions which may cause or mimic dementia include depression, brain tumors, nutritional deficiencies, head injuries, hydrocephalus, infections (AIDS, meningitis, syphilis), drug reactions and thyroid problems. It is imperative that all persons experiencing memory deficits or confusion undergo a thorough diagnostic workup. This requires examination by a physician experienced in the diagnosis of dementing disorders and detailed laboratory testing. The examination should include a reevaluation of all medications. This process will help the patient obtain treatment for reversible conditions, aid the patient and family in planning future care, and provide important medical information for future generations.

Alzheimer's Disease
Alzheimer's Disease (AD) is the most common of the dementing disorders, affecting as many as four million Americans. Alzheimer's Disease is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior. Symptoms of Alzheimer's Disease include a gradual memory loss, decline in ability to perform routine tasks, disorientation in time and space, impairment of judgment, personality change, difficulty in learning, and loss of language and communication skills. As with all dementias, the rate of progression in Alzheimer's patients varies from case to case. From the onset of symptoms, the life span of an individual with AD can range anywhere from three to twenty or more years. The disease eventually leaves its victims unable to care for themselves. While a definitive diagnosis of Alzheimer's Disease is possible only through the examination of brain tissue, which is usually done at autopsy, it is important for a person suffering from any symptoms of dementia to undergo a thorough clinical examination. In fact, after such an evaluation, approximately twenty percent of suspected Alzheimer's cases prove to be a medical condition other than Alzheimer's, sometimes treatable.

Multi-infarct Dementia
Multi-infarct dementia (MID), or vascular dementia, is a deterioration of mental capabilities caused by multiple strokes (infarcts) in the brain. The onset of MID may be relatively sudden as many strokes can occur before symptoms appear. These strokes may damage areas of the brain responsible for a specific function as well as produce generalized symptoms of dementia. As a result, MID may appear similar to Alzheimer's Disease. Multi-infarct dementia is not reversible or curable, but recognition of an underlying condition (high blood pressure) often leads to a specific treatment that may modify the progression.

Parkinson's Disease
Parkinson's Disease (PD) is a progressive disorder of the central nervous system which affects more than one million Americans. Individuals with PD lack the substance dopamine, which is important for the central nervous system's control of muscle activity. Parkinson's Disease is often characterized by tremors, stiffness in limbs and joints, speech impediments and difficulty in initiating physical movement. Late in the course of the disease, some patients develop dementia and eventually Alzheimer's Disease. Conversely, some Alzheimer patients develop symptoms of Parkinson's Disease. Medications such as levodopa, which converts itself into dopamine once inside the brain and depreynl, which prevents degeneration of dopamine-containing neurons, are used to improve diminished or reduced motor symptoms in PD patients, but do not correct the mental changes that occur.

Huntington's Disease
Huntington's Disease is an inherited, degenerative brain disease which affects the mind and body. The disease usually begins during mid-life, and is characterized by intellectual decline, and irregular and involuntary movements of the limbs or facial muscles. Other symptoms of Huntington's Disease include personality change, memory disturbance, slurred speech, impaired judgment and psychiatric problems. Huntington's Disease currently affects more than 25,000 Americans. The diagnostic process for Huntington's Disease includes an evaluation of family medical history, recognition of typical movement disorders and CAT brain scanning. A genetic marker linked to Huntington's Disease has been identified on chromosome 4 and researchers are working on locating the gene itself. Although there is no treatment available to stop the progression of the disease, the movement disorders and psychiatric symptoms can be controlled by drugs.

Creutzfeldt-Jakob
Disease Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disorder caused by a transmissible infectious organism, probably a virus. Early symptoms of CJD include failing memory, changes in behavior, and a lack of coordination. As the disease progresses, usually very rapidly, mental deterioration becomes pronounced, involuntary movements (especially muscle jerks) appear, and the patient may become blind, develop weakness in the arms or legs, and ultimately lapse into a coma. The death of CJD patients is usually caused by infections in the bedridden, unconscious patient. Like Alzheimer's Disease, a definitive diagnosis of CJD can be obtained only through an examination of brain tissue, usually at autopsy.

Pick's Disease
Pick's Disease is also a rare brain disorder which, like Alzheimer's Disease, is usually difficult to diagnose. Disturbances in personality, behavior and orientation may precede and initially be more severe than memory defects. Like Alzheimer's Disease, a definitive diagnosis is usually obtained at autopsy.

Normal Pressure Hydrocephalus
Normal Pressure Hydrocephalus is an uncommon disorder which involves an obstruction in the normal flow of cerebrospinal fluid. This blockage causes a buildup of cerebrospinal fluid on the brain. Symptoms of Normal Pressure Hydrocephalus include dementia, urinary incontinence and difficulty in walking. Presently, the most useful diagnostic tools are the neuroimaging techniques (such as, MRI - magnetic resonance imaging). Normal Pressure Hydrocephalus may be caused by any several factors including meningitis, encephalitis and head injuries. In addition to treatment of the underlying cause, the condition may be corrected by a neurosurgical procedure (insertion of a shunt) to divert the fluid away from the brain.

Depression
Depression is a psychiatric disorder marked by sadness, inactivity, difficulty in thinking and concentration, feelings of hopelessness, and sometimes suicidal tendencies. Many severely depressed patients will have some mental deficits including poor concentration and attention. When dementia and depression are present together, intellectual deterioration may be exaggerated. Depression, whether present alone or in combination with dementia, can be reversed with proper treatment.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Alzheimer's Disease Statistics

Alzheimer's Disease (AD) is a progressive, degenerative disease of the brain, and the most common form of dementia. Here are some things you should know about Alzheimer's Disease:

• Approximately four million Americans have AD (Alzheimer's Disease). In a 1993 national survey, 19 million Americans said they had a family member with AD, and 37 million said they know someone with AD.
• 14 million Americans will have AD by the middle of the next century unless a cure or prevention is found.
• One in ten persons over 65 and nearly half of those over 85 have AD. A small percentage of people as young as their 30s and 40s get the disease.
• A person with AD will live an average of eight years and as many as 20 years or more from the onset of symptoms.

• U.S. society spends at least $100 billion a year on AD. Neither Medicare nor most private health insurance covers the long term care most patients need.

• More than seven of ten people with Alzheimer's Disease live at home. Family and friends provide almost 75 percent of the home care. The remainder is "paid" care, costing an average of $12,500 per year. Families pay almost all of that out-of-pocket.
• Half of all nursing home residents suffer from AD or a related disorder. The average cost for nursing home care is $42,000 per year, but can exceed $70,000 per year in some areas of the country.
• The average lifetime cost per patient is $174,000.
• Alzheimer's Disease is the third most expensive disease in the United States, after heart disease and cancer.
• The federal government estimates spending approximately $349.2 million for Alzheimer's Disease research in 1998. This represents $1 for every $287 the disease now costs society. The federal investment in heart disease, cancer and AIDS is four to seven times higher.

The Alzheimer's Association is the only national voluntary health organization dedicated to researching the causes, treatments, cures and preventions of Alzheimer's Disease and to providing education and support services to people with AD, their families and caregivers.

For further information on statistics, you may contact the Benjamin B. Green-Field Library of the Alzheimer's Association at (312) 335-9602.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Dementia: Reversible and Irreversible

There are more than 60 medical, psychiatric and neurologic conditions associated with dementia. Not long ago, it was believed that 20-40 percent of dementias were potentially reversible. Now recent studies suggest that most dementias, while manageable, remain irreversible, while less than 5 percent are reversible.

The following summary should help to differentiate between these two groups.

Reversible Dementias

Characteristics of reversible dementias:

• Can be reversed or cured
• Temporary condition
• Brain regains lost functions when treated

Common causes of reversible dementias:

• Brain disease
  • Tumors
  • Subdural hematoma
  • Hydrocephalus
• Depression
  • Response to life's stresses
  • Chemical imbalances in the brain
• Medication
  • Negative drug interactions
  • Drug overdose
  • Alcohol abuse
• Malnutrition
  • Vitamin (A, C, B-12 and folate) deficiencies
  • Mineral (iron) deficiencies
• Heart disease -- Lack of oxygen to the brain causes confusion
  • Arrhythmias
  • Congestive heart failure
  • Myocardial infarction
• Traumas
  • Usually due to falls
  • Concussions (skull fractures) or contusions (bruises) to the head
• Metabolic or endocrine disorders
  • Thyroid disease
  • Hypo/hyperglycemia and other electrolyte imbalances
  • Dehydration
  • Accidental hypothermia
  • Renal failure
  • COPD (Chronic Obstructive Pulmonary Disease)

• Infection
  
  • Produces fever, affecting brain's cognitive abilities
• Environmental changes
  • Visual and hearing loss
  • Loss of daylight and decrease in activities can result in "sundowning"
  • Heavy metal poisoning from gas leaks, exhaust fumes or other toxins

Irreversible Dementias

Characteristics of irreversible dementias:

• Result in permanent brain damage
• Cannot be reversed or cured

Common causes of irreversible dementias:

• Alzheimer's disease or Senile Dementia of the Alzheimer's type (SDAT)
  • Progressive mental deterioration spanning a long period of time (3-20 years)
  • Affects 60 percent of those diagnosed with irreversible dementia
  • Fourth leading cause of death in the United States

• Vascular dementia or Multi-infarct Dementia
  • Series of pockets of deteriorated tissue in the brain that cause a very erratic or unpredictable pattern.
  • Caused by multiple, small "mini-strokes" in the brain brought on by bleeding or lack of blood flow to the brain's blood vessels.
    • Hypertension (high blood pressure) and arteriosclerosis (hardening of the arteries) are precursors to these mini-strokes
  • Has an abrupt onset with a step-wise deterioration in function

• Other neurological diseases causing irreversible dementia
  • Parkinson's disease
  • Huntington's Chorea
  • Pick's disease
  • Creutzfeldt-Jakob disease
  • Down's Syndrome
  • AIDS

Source: "Understanding the Alzheimer's Disease and Related Dementias: Lesson 1 - Overview of Dementia." (no longer available on web)

Mace, N., MA and P. Rabins, MD, MPH. (1991) The 36-Hour Day, revised edition. Baltimore: Johns Hopkins University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Area Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Facts about Alzheimer's Disease

FACT: Alzheimer's Disease is the fourth leading cause of death affecting more than four million Americans.

FACT: Unless a cure or means of prevention is found, more than 14 million Americans will be afflicted by the middle of the next century.

FACT: Currently more than 40,000 Nebraskans have been diagnosed with Alzheimer's Disease.
* By the year 2000, the number of those diagnosed will rise to 77,000 - enough to fill Memorial Stadium in Lincoln, Nebraska.

FACT: An estimated 50 percent of the population over age 85 are affected by Alzheimer's Disease, and 10 percent of the population over age 65 are affected.

FACT: More than 50 percent of nursing home residents have Alzheimer's Disease or a related disorder. Annual cost of care ranges from $25,000 to $35,000 annually.*

FACT: There are currently 12,463 Nebraskans with Alzheimer's Disease in nursing facilities.* A person with Alzheimer's Disease can live from three to 20 years or more from the onset of symptoms.

FACT: Over $373 million is spent in Nebraska on the care of individuals with Alzheimer's Disease in nursing facilities annually.*

FACT: An average of $18,000 is spent annually to care for an individual with Alzheimer's Disease in the home. Total amount spent in Nebraska: $596 million per year.*

FACT: One third of the caregivers of individuals with dementia are employed either full-time or part-time outside of the home.

*Based on 1990 census figures.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Original Clinical Description of Alzheimer's Disease "Perplexed Woman"

An excerpt taken from a medical book by Dr. Alois Alzheimer describing a patient in 1907 who had the disease.

A woman, 51-years-old, showed jealously toward her husband as the first notable sign of the disease. Soon, a rapidly increasing loss of memory could be noticed. She could not find her way around in her own apartment. She carried objects back and forth and hid them. At times, she would think that someone wanted to kill her, and would begin shrieking loudly.

In the institution, her entire behavior bore the stamp of utter perplexity. She was totally disoriented to time and place. Occasionally, she stated that she could not understand and did not know her way around. At times she greeted the doctor like a visitor, and excused herself for not having finished her work; at times, she shrieked loudly that he wanted to cut her, or she repulsed him with indignation, saying that she feared from him something against her chastity. Periodically, she was totally delirious, dragged her bedding around, called her husband and her daughter, and seemed to have auditory hallucinations. Frequently, she shrieked with a dreadful voice for many hours.

Because of her inability to comprehend the situation, she always cried out loudly as soon as someone tried to examine her. Only through repeated attempts was it possible finally to ascertain anything. Her ability to remember was severely disturbed. If one pointed to objects, she named most of them correctly, but immediately afterwards, she would forget everything again. When reading, she went from one line into another, reading the letters or reading with senseless emphases. When writing, she repeated individual syllables several times, left out others, and quickly became stranded. When talking, she frequently used perplexing phrases and some periphrastic expressions (milk-pourer instead of cup). Sometimes one noticed her getting stuck. Some questions she obviously did not comprehend. She seemed no longer to understand the use of some objects. Her gait was not impaired. She could use both hands equally well. Her patellar reflexes were present. Her pupils reacted. Somewhat rigid radial arteries; no enlargement of cardiac dullness; no albumin. During her subsequent course, the phenomena that were interpreted as focal symptoms were at times more noticeable and at times less noticeable, but always they were only slight. At the end, the patient was completely stuporous; she lay in her bed with her legs drawn up under her body; and in spite of all precautions, she acquired decubitus ulcers.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

The Short Portable Mental Status Questionnaire (SPMSQ)

SCORING:*

0-2 errors: normal mental functioning

3-4 errors: mild cognitive impairment

5-7 errors: moderate cognitive impairment

8 or more errors: severe cognitive impairment

*One more error is allowed in the scoring if a patient has had a grade school education or less.
*One less error is allowed if the patient has had education beyond the high school level.

Source: Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of American Geriatrics Society. 23, 433-41.

Compiled by the Great Plains Area Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Stages of Alzheimers's Disease

• There are roughly three different stages with characteristic signs, symptoms and behaviors.
• Not all individuals will progress through the disease at the same rate, and not all will display all of the characteristics that will be mentioned.
• Each case is individualized.
• We do know that the younger a person is when diagnosed with Alzheimer's, the faster the disease progresses.
• Divide the three stages into three categories. (Remember, there are no clear-cut divisions.)
  1. Cognitive changes - changes in perception and awareness.
  2. Affective changes - changes in emotions and feelings.
  3. Physical changes - observable changes that we can see in one's physical condition.

1. FIRST STAGE (EARLY STAGE) -- 2-4 YEARS
   
   
   • Diagnosis is usually not made at this point - could be one of the 50 to 150 other disorders causing the same signs and symptoms in this first stage.
   • Changes are subtle, gradual, and insidious occurring over a period of months or years.
   1. Cognitive Changes (perception and awareness)
      
      
      1. Memory loss -- especially of recent events and new information.
      2. Uncertainty and hesitancy in initiating behaviors and actions.
      3. Unable to perform simple tasks -- loss of reason, logic, and judgment.
      4. Difficulty focusing attention - decreased attention span.
      5. Motor aphasia (loss for words).
      The changes are very subtle in this first stage of Alzheimer's Disease (AD). The family usually does not recognize anything is wrong, or attributes it to stress, lack of sleep, job, getting older, etc. Patients are very good at compensating for their deficiencies in this first stage. They may do very well in social situations and in a normal nonspecific conversation. It only becomes evident something may not be right when you ask very specific questions such as: "How old are you?" "What year is it?" "What date is it?" "What did you have for dinner?" Persons are very aware in the first stage of AD that they cannot remember. They may display symptoms of depression over their memory loss in this first stage.
      
   2. Affective Changes (changes in emotions and feelings)
      
      
      1. Decreased interest in environment and present affairs - social withdrawal.
      2. Indifferent to the normal courtesies of social life.
      3. Loss of initiative and sense of humor, may have a personality change.
      4. Lack of spontaneity (absent-minded, decreased concentration, decreased initiative and decreased drive, dull affect).
      5. Carelessness in appearance and actions.
      6. Emotional instability. The two most common emotions are:
         • Depression, because the person is aware they are forgetful, and
         • Anger/frustration, because they cannot remember or do things the way they used to.
      7. Personality changes / marital problems.
         
   3. Physical Changes (very few)
      
      Example - The AD person may look physically fine and may be in perfect cardiovascular health. They will go out, run a mile, come home, and forget where they put their tennis shoes.
      1. May have a slight weakness or slower movements.
      2. May have a small amount of muscular twitching.

   By the end of the first stage, people with AD are beginning to perform poorly at work. They might forget to perform tasks that were routine in their daily lives. They may be unable to add and subtract figures correctly, have difficulty organizing times and dates, and may be fired from their job with no explanation and often no retirement or insurance benefits.
   
   
   

2. SECOND STAGE (2-12 YEARS -- LONGEST OF ALL STAGES)
   
   
   • Diagnosis is usually made here.
   • Families may be relieved to know that the relative has a "disease" and is not mentally ill. Signs and symptoms including behaviors are magnified many times over in the second stage, and the person is usually taken to a doctor, because the family is aware that their memory loss and decreased intellectual function is not a normal process of aging.
   1. Cognitive Changes
      
      
      1. Obvious defects in memory, retention, and recall. Their recent memory (short-term memory) is the first to go.
      2. Unable to concentrate - loses their train of thought, hesitation in verbal response.
      3. Forgets appointments and socially significant events.
      4. Forgets to initiate or complete normal routines including health and hygiene measures.
      5. Aimless wandering / restlessness (especially at night).
      6. Disorientation to time - confuses day and night.
      7. Misplaces items and then claims they were stolen.
      8. Hallucinations.
      9. Inappropriate social behavior.
      10. Increased dependence on significant others - role reversal, social isolation.
      11. Mirror sign - unable to recognize themselves in a mirror.
          
          • Example: The Alzheimer's individual may stand in front of a mirror and carry on a conversation with themselves, not realizing it is themselves they are seeing. If they do not recognize themselves, you can see why they would not recognize family, neighbors and friends.
      12. Unable to understand or express language.
      13. Unable to attach meaning to sensory impressions.
      14. Unable to do math calculations.
      15. Unable to carry out purposeful movements.
      16. Unable to read or write.
          
          
3. THIRD STAGE - TERMINAL (1-3 YEARS)
   
   

4. Families usually face the task of making major decisions during this stage regarding nursing home placement since the individual with Alzheimer's requires total physical care.

   1. Cognitive Changes
      
      
      1. Little or no response to stimuli.
      2. Unable to perform purposeful movements.
      3. Does not recognize others, including family.
   2. Affective Changes
      
      
      1. Lethargic - no energy.
      2. Expresses little or no emotion.
   3. Physical Changes
      
      
      1. Mute and unresponsive.
      2. Emaciation - marked weight loss with decreased appetite; choking is common due to the muscles that control swallowing being affected.
      3. Incontinence.
      4. Totally incapable of caring for self.
      5. Seizures - grand mall, approximately 50 percent of the time.
      6. Bedridden.
      7. Extreme psychomotor retardation.
      8. Susceptible to injuries and infections.
         

         The most frequent cause of death is pneumonia. Alzheimer's Disease debilitates the body to the point where a secondary infection takes over. Other contributing factors include malnutrition, dehydration, and immobilization.

 

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Is it Normal or is it Alzheimer's?The 10 Warning Signs

Normal Possible Alzheimer's 1. Temporarily forgetting a colleague's name Not being able to remember the name later 2. Forgetting the carrots on the stove until the meal is over Forgetting that the meal was ever prepared 3. Unable to find the right word, but using a fit substitute Uttering incomprehensible sentences 4. Forgetting for a moment where you are going Getting lost on own street 5. Talking on the phone, and temporarily forgetting to a watch child Forgetting there is a child 6. Having trouble balancing a checkbook Not knowing what the numbers mean 7. Misplacing a wristwatch until the steps are retraced Putting a wristwatch in sugar bowl 8. Having bad day Having rapid mood swings 9. Gradual changes in personality Drastic personality changes 10. Tiring of housework, but getting back to it Not knowing or caring about housework that needs doing

 

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Frequently Used Terms of Alzheimer's Disease

Alzheimer's is a complicated disease. Unless you are a health care professional or an experienced caregiver, you're probably not familiar with much of the terminology used to describe behaviors, conditions and care options associated with Alzheimer's Disease (AD). To help you better understand some of the jargon you might encounter, the Alzheimer's Association has developed this glossary.

A| B| C| D| E| F| G| H| I| J| K| L| M| N| O| P| Q| R| S| T| U| V| W| X| Y| Z|

abilities	Level at which certain actions and activities can be carried out.
Acetylcholine	A neurotransmitter that appears to be involved in learning and memory. Acetylcholine is severely diminished in the brains of persons with Alzheimer's disease.
activities of daily living (ADL's)	Personal care activities necessary for everyday living, such as eating, bathing, grooming, dressing and toileting. People with dementia may not be able to perform necessary functions without assistance. Professionals often assess a person's ADL's to determine what type of care is needed.
ADL's	Activities of daily living. See previous definition.
adverse reaction	An unexpected effect of drug treatment that may be serious or life-threatening, such as an allergic reaction.
adult day services	Program providing participants with opportunities to interact with others, usually in a community center or facility. Staff lead various activities such as music programs and support groups. Transportation is often provided.
advance directives	Written documents, completed and signed when a person is legally competent, that explain a person's medical wishes in advance, allowing someone else to make treatment decisions on his or her behalf.
aggression	Aggressive behavior is hitting, pushing, or threatening that commonly occurs when a caregiver attempts to help a patient with daily activities, such as dressing. Keeping this type of behavior under control is important, because aggressive persons can cause injury to themselves or another person.
agitation	Vocal or motor behavior (screaming, shouting, complaining, moaning, cursing, pacing, fidgeting, wandering, etc.) that is either disruptive, unsafe, or interferes with the delivery of care in a particular environment. Not all abnormal behaviors can be considered agitation unless they pose risk or discomfort. Agitation is a nonspecific symptom of one or more physical, or psychological processes.
Alzheimer's Disease	A progressive, neurodegenerative disease characterized by loss of function and death of nerve cells in several areas of the brain, leading to loss of mental functions such as learning and memory. Alzheimer's Disease is the most common cause of dementia.
ambulation	The ability to walk and move about freely.
amyloid	A protein deposit associated with tissue degeneration; amyloid is found in numerous conditions.
amyloid plaque	See "neuritic plaque"
amyloid precursor protein	A protein found in the brain, heart, kidney, lung, spleen, and intestine. The normal function of APP (amyloid precursor protein) in the body is unknown. In Alzheimer's Disease, APP is abnormally processed and converted to beta-amyloid protein. Beta-amyloid is the protein deposited in amyloid plaques.
APP	Amyloid precursor protein. See the previous definition.
animal models	Animals which have been altered to develop Alzheimer's Disease. With models, researchers can study the mechanisms of a disease and test therapies.
anti-inflammatory drugs	Drugs which reduce inflammation by modifying the body's immune system.
anxiety	A feeling of apprehension, fear, nervousness, or dread, accompanied by restlessness or tension.
apathy	Lack of interest, concern or emotion.
aphasia	Difficulty understanding others and/or expressing oneself verbally.
apolipoprotein E (apoE)	A protein whose main function is to transport cholesterol. The gene for apoE is on chromosome 19. There are three forms of apoE: E2, E3, E4. E4 is associated with about 60 percent of late-onset Alzheimer Disease and is considered a risk factor for Alzheimer's Disease.
art therapy	Activities that allow people with dementia opportunities to express their feelings creatively through art.
assessment	An evaluation, usually performed by a physician, of a person's mental, emotional and social capabilities.
assisted living	A residential care setting that combines housing, support service and health care for people typically in the early or middle stages of Alzheimer's Disease.
atrophy	Shrinking of size; often used to describe loss of brain mass seen in cases of Alzheimer's Disease during autopsy.
autonomy	A person's ability to make independent choices.
autopsy	Examination of a body organ and tissue after death. Autopsy is often performed (upon request) in order to confirm diagnosis of Alzheimer's Disease.

 

 

behavioral symptoms	In Alzheimer's Disease, these are the symptoms that relate to action or emotion, such as wandering, depression, anxiety, hostility, and sleep disturbances.
beta-amyloid	Beta-amyloid protein is a specific type of amyloid normally found in humans and animals. In Alzheimer's Disease, beta-amyloid is abnormally processed by nerve cells and becomes deposited in senile plaques in the brains of persons with the disease.
Binswanger's disease	A type of dementia associated with stroke-related changes in the brain.
brain	One of the two components of the central nervous system, the brain is the center of thought and emotion. It is responsible for the coordination and control of bodily activities, and the interpretation of information from the senses (sight, hearing, smell, etc.).

 

calcium channel blocker	A drug that blocks the entry of calcium into cells, thereby reducing activities that require calcium, such as neurotransmission. Calcium channel blockers are used primarily in the treatment of certain heart conditions, but are being studied as potential treatments for Alzheimer's disease.
calcium	An element taken in through the diet that is essential for a variety of bodily functions, such as neurotransmission, muscle contraction, and proper heart function. Imbalances of calcium can lead to many health problems, and can cause nerve cell death.
caregiver	The primary person in charge of care of an Alzheimer patient, usually a family member or a designated health care professional.
care planning	A written action plan containing strategies for delivering care that address an individuals specific needs or problems.
case management	A term used to describe formal services planned by care professionals.
cell	The fundamental unit of all organisms; the smallest structural unit capable of independent functioning.
Cell body	In nerve cells, this is the central portion from which axons and dendrites sprout. The cell body primarily controls life-sustaining functions of a nerve cell.
Cell membrane	The outer boundary of the cell; the cell membrane helps control what substances enter or exit the cell.
central nervous system (CNS)	One of the two major divisions of the nervous system. Composed of the brain and spinal cord, the CNS is the control network for the entire body.
CNS	Central nervous system. See previous definition.
cerebral cortex	The outer portion of the brain, consisting of layers of nerve cells and the pathways that connect them. The cerebral cortex is the part of the brain in which thought processes take place. In Alzheimer's Disease, nerve cells in the cerebral cortex die.
choline	A natural substance required by the body that is obtained from various foods, such as eggs; one essential component of acetylcholine.
choline acetyltransferase	An enzyme that controls the production of acetylcholine; appears to be depleted in the brains of Alzheimer patients.
CAT	Choline acetyltransferase. See the previous definition.
cholinergic system	The system of nerve cells that uses acetylcholine as its neurotransmitter and is damaged in the brains of Alzheimer patients.
cholinesterase	An enzyme that breaks down acetylcholine, so that its parts can be recycled.
chromosome	An H-shaped structure inside the cell nucleus made up of tightly coiled strands of genes. Each chromosome is numbered (in humans, 1-46). Genes on chromosome 1, 14, 19, and 21 are associated with Alzheimer's Disease.
clinical trial	Organized studies that test the value of various treatments, such as drugs or surgery, in human beings.
coexisting illness	A medical condition that exists simultaneously with another, such as arthritis and dementia.
cognitive abilities	Abilities such as judgment, memory, learning, comprehension, and reasoning.
Cognitive symptoms	In Alzheimer's Disease, these are the symptoms that relate to loss of thought processes, such as learning, comprehension, memory, reasoning, and judging.
combativeness	Incidents of aggression.
competence	A person's ability to make informed choices.
computed tomography	A type of imaging scan which shows the internal structure of a person's brain. In the differential diagnosis of dementia, CT scans can reveal brain tumors and small strokes in the brain.
CT scan	Computed tomography. See the previous definition.
continuum of care	Care services available to assist individuals throughout the course of decline.
controls	A group of people or animals that does not receive a treatment or other intervention, or that is not affected with the disease being studied. This group is used as a standard to compare any changes in a group that receives treatment, or that has the disease. In Alzheimer's Disease research, patients are often compared with controls of the same age (age-matched) to rule out the effects of age.
Creutzfeldt-Jakob Disease	A rare disorder that has infectious and genetic causes, which typically causes memory failure and behavioral difficulties.
cueing	The process of providing cues, prompts, hints and other meaningful information, direction or instruction to aid a person who is experiencing memory difficulties.

dementia	The loss of intellectual functions (such as thinking, remembering, and reasoning) of sufficient severity to interfere with a person's daily functioning. Dementia is not a disease itself, but rather a group of symptoms which may accompany certain diseases or conditions. Symptoms may also include changes in personality, mood, and behavior. Dementia is irreversible when caused by disease or injury, but may be reversible when caused by drugs, alcohol, hormone or vitamin imbalances, or depression.
deficits	Physical and/or cognitive skills or abilities that a person has lost, has difficulty with, or can no longer perform due to his or her dementia.
delusion	A false idea, typically originating from a misinterpretation, but firmly believed and strongly maintained in spite of contradictory proof or evidence.
dendrites	Branched extensions of the nerve cell body that receive signals from another nerve cell(s). Each nerve cell usually has many dendrites.
diagnosis	The process by which a physician determines what disease a patient has by studying the patient's symptoms and medical history and analyzing any tests performed ( i.e., blood, urine, brain scans, etc.).
disorientation	A cognitive disability in which the senses of time, direction and recognition become difficult to distinguish
deoxyribonucleic acid	The basis of all genetic material. Chromosomes are composed of DNA (Deoxyribonucleic acid) and each gene carries a specific sequence. Patterns of nucleotides represent particular genes. For example, ATTGCCA is gene 1; GGTACCATA is gene 2.
DNA	Deoxyribonucleic acid. See the previous definition.
double-blind, placebo-controlled study	A research procedure in which neither researchers nor patients know who is receiving the experimental substance or treatment and who is receiving a placebo.
Down's Syndrome	A syndrome which causes slowed growth, abnormal facial features, and mental retardation in newborns. An extra copy of all or part of chromosome 21 causes Down's Syndrome. Some individuals with Down's Syndrome develop Alzheimer's Disease.

early-onset	A type of Alzheimer's disease in which individuals are diagnosed with AD (Alzheimer's Disease) before the age of 65. Approximately 1 to 10 percent of AD patients have early-onset. Early-onset AD is associated with mutations in genes located on chromosomes 1, 14 and 21.
early stage	Period in Alzheimer's Disease (AD) when individual experiences very mild to mild cognitive impairments.
environment	Physical and interpersonal surroundings that can affect mood and behaviors in people with dementia.
electron microscope	A powerful microscope that employs a stream of electrons to magnify an image to a much greater degree.
enzyme	Protein produced by living organisms that promotes or otherwise influences chemical reactions.
estrogen	A hormone produced by the ovaries and testes. It stimulates the development of secondary sexual characteristics and induces menstruation in women. Estrogen is important for the maintenance of normal brain function and development of nerve cells. Estrogen is used therapeutically to treat breast and prostate cancer, osteoporosis, and to relieve the discomforts of menopause. Recent research suggests that estrogen may be beneficial in treating Alzheimer's Disease.

familial	Alzheimer's Categorization of persons with Alzheimer's who have had other members Disease of their immediate family diagnosed with the disease.
free radicals	Highly toxic molecules capable of causing damage in brain and other tissue. Free radicals are common byproducts of normal chemical reactions occurring in cells. The body has several mechanisms to deactivate free-radicals.

 

gait	Refers to a person's manner of walking. People in the later stages of Alzheimer's often have "reduced gait," meaning they may lose the ability to lift their feet as they walk.
gene	The basic unit of heredity; a section of DNA (Deoxyribonucleic acid) coding for a particular trait.
Gene linkage	A group of genes located closely together on a chromosome.
Gene regulation	The control of the rate or manner in which a gene is expressed as a protein.
genetic susceptibility	The state of being more likely than the average person to develop a disease as a result of genetics.
genome	All the genes of an organism.
glutamate	A neurotransmitter that normally is involved in learning and memory. Under certain circumstances, it appears to cause the death of nerve cells in a variety of neurodegenerative disorders.

 

 

hippocampus	A part of the brain that is important for learning and memory.
hoarding	Collecting and putting things away in a guarded manner.
hospice	Philosophy and approach to providing comfort and care rather than heroic lifesaving measures.
Huntington's Disease	Inherited, degenerative brain disease that affects the mind and body, characterized by intellectual decline and involuntary movement of limbs.

immune system	A system of cells that protect a person from bacteria, viruses, toxins, and other foreign substances that gain access into the body
inflammatory response	The immune system's normal response to tissue injury or abnormal stimulation caused by a physical, chemical, or biological substance. Immune system cells, if abnormally stimulated, can often cause further tissue damage while responding to the injured site.
instrumental activities	Secondary level of activities (different from ADL's such as eating, dressing, of daily living (IADL's) bathing) important to daily living, such as cooking, writing and driving.

late stage	Designation given when dementia symptoms have progressed to the extent that a person has little capacity for self care.
layering	Behavior that involves inappropriately changing or layering clothing on top of one another.
Lewy body dementia	A dementing illness associated with protein deposits called Lewy bodies, found in the cortex region of the brain.

magnetic resonance imaging (MRI)	A brain scanning technique that generates cross sectional images of a human brain by detecting small molecular changes. MRI (magnetic resonance imaging) scans reveal a contrast between normal and abnormal tissues. The image produced is similar to those generated by CT (Computed Axial Tomography) scans. There are no side-effects or risks associated with MRI scans (although MRI can affect electrical devices like pacemakers and hearing aids).
MRI	Magnetic resonance imaging. See the previous definition.
Medicaid	Program sponsored by the federal government administered by states, intended to provide health care and health-related services to low-income individuals.
Medicare	A federal health insurance program for people 65 and older, and individuals with other disabilities.
memory	The ability to process information that requires attention, encoding, storage and retrieval.
metabolism	The complex chemical and physical processes of living organisms that promote growth, sustain life, and enable all other bodily functions to take place.
microglia	A type of immune cell found in the brain. Microglia cells are scavengers, engulfing dead cells and other debris. In Alzheimer's Disease, microglia cells are found associated with dying nerve cells and amyloid plaques.
Mini-Mental State Exam (MMSE)	A standard mental status exam routinely used to measure a person's basic cognitive skills, such as short-term memory, long-term memory, orientation, writing and language.
MMSE	Mini-Mental State Exam. See the previous definition.
model system	A system used to study processes that take place in humans or other living organisms.
monoamine oxidase inhibitor (MAOI)	A drug that interferes with the action of monoamine oxidase, slowing the breakdown of certain neurotransmitters. Used in the treatment of depression.
MAOI	Monoamine oxidase inhibitor. See the previous definition.
Multi-infarct dementia	Also known as vascular dementia, this form of dementia is caused by a number of strokes in the brain. These strokes can affect some intellectual abilities, impair motor and walking skills, and can cause the individual to experience hallucinations, delusions, or depression. The onset of MID is usually abrupt and often progresses in a stepwise fashion. Individuals with MID are likely to have risk factors for strokes, such as high blood pressure, heart disease or diabetes. MID cannot be treated; once the nerve cells die, they cannot be replaced. However, risk factors can be treated, which may help prevent further damage.
MID	Multi-infarct dementia. See previous definition.
music therapy	Use of music to affect physical, psychological, cognitive and/or social functioning.

 

nerve cell (neuron)	The basic working unit of the nervous system. The nerve cell is typically composed of a cell body containing the nucleus, several short branches (dendrites), and one long arm (the axon) with short branches along its length and at its end. Nerve cells send signals that control the actions of other cells in the body, such as other nerve cells and muscle cells.
nerve cell line	A group of nerve cells derived from a cell culture that can be used for experimental purposes.
Nerve growth factor	A protein that promotes nerve cell growth and may protect some types of nerve cells from damage, including nerve cells in the cholinergic system.
Nerve cell transplantation	An experimental procedure in which normal brain cells are implanted into diseased areas of the brain to replace dying or damaged cells.
neurodegenerative disease	A type of neurological disorder marked by the loss of nerve cells. See Alzheimer's Disease, Parkinson's Disease.
neuritic plaque	Also called amyloid or senile plaques. Abnormal cluster of dead and dying nerve cells, other brain cells, and protein. Neuritic plaques are one of the characteristic structural abnormalities found in the brains of Alzheimer patients. Upon autopsy, the presence of neuritic plaques and neurofibrillary tangles is used to positively diagnose AD (Alzheimer's Disease).
neurofibrillary tangle	Accumulation of twisted protein fragments inside nerve cells. Neurofibrillary tangles are one of the characteristic structural abnormalities found in the brains of Alzheimer patients. Upon autopsy, the presence of neuritic plaques and neurofibrillary tangles is used to positively diagnose AD.
neurological disorder	Disturbance in structure or function of the nervous system resulting from developmental abnormality, disease, injury, or toxin.
neurologist	A physician who diagnoses and treats disorders of the nervous system.
neuropathology	Changes in the brain produced by a disease.
neurotransmission	Passage of signals from one nerve cell to another via chemical substances or electrical signals.
neurotransmitter	Specialized chemical messenger (e.g., acetylcholine, dopamine, norepinephrine, serotonin) that sends a message from one nerve cell to another. Most neurotransmitters play different roles throughout the body, many of which are not yet known.
neurotrophic factor	A protein, such as nerve growth factor, that promotes nerve cell growth and survival.
nucleus	The central component of a cell; contains all genetic material.

onset

Defines time of life when Alzheimer's disease begins (e.g., Early-onset, late-onset).

pacing	Aimless wandering, often triggered by an internal stimuli (e.g., pain, hunger or boredom) or some distraction in the environment (e.g., noise, smell, temperature).
paranoia	Suspicion of others that is not based on fact.
perseveration	Persistent repetition of an activity, a word, phrase or movement, such a tapping, wiping or picking.
Pick's Disease	Type of dementia in which degeneration of nerve cells causes dramatic alterations in personality and social behavior, but typically not memory (until later in the disease).
pillaging	Taking things that belong to someone else. A person with dementia may think something belongs to her, even when it clearly does not.
Parkinson's Disease	A progressive, neurodegenerative disease characterized by the death of nerve cells in a specific area of the brain; the cause of nerve cell death is unknown. Parkinson patients lack the neurotransmitter dopamine, and have such symptoms as tremors, speech impediments, movement difficulties, and often dementia.
peripheral nervous system (PNS)	One of the two major divisions of the nervous system. Nerves in the PNS connect the central nervous system with sensory organs, other organs, muscles, blood vessels, and glands.
PNS	Peripheral nervous system. See the previous definition.
pharmacology	The study of drugs, including their composition, production, uses, and effects in the body.
placebo	A "sugar pill." See double-blind, placebo-controlled study.
plaques and tangles	See " neuritic plaque" and "neurofibrillary tangle."
positron emission tomography (PET) scan	An imaging scan that measures the activity or functional level of the brain by measuring its usage of glucose.
PET scan	Positron emission tomography scan. See previous definition.
protein metabolism	The breakdown of proteins into amino acids, a process essential to human growth and metabolism.
psychosis	A general term for a state of mind in which thinking becomes irrational and/or disturbed. It refers primarily to delusions, hallucinations, and other severe thought disturbances.

 

quality care

Term used to describe care and services that allow recipients to attain and maintain their highest level of mental, physical and psychological function, in a dignified and caring way.

reassurance	Encouragement intended to relieve tension, fear and confusion that result from dementing illnesses.
receptor	In the nervous system, a site on a nerve cell that receives a specific neurotransmitter; the "message receiver."
reinforcement	Employment of praise, repetition and stimulation of the senses to preserve a person's memory, capabilities and level of self-assurance.
reminiscence	Life review activity aimed at surfacing and reviewing positive memories and experiences.
repetitive behaviors	Repeated questions, stories, outbursts or specific activities done over and over again, common in people with dementia.
respite	A short break or time away.
Respite care	Services that provide people with temporary relief from tasks associated with caregiving (such as, in-home assistance, short nursing home stays, adult day care).
restraints	Used to ensure safety, physical restraints are attached to a person to restrict and control movement. Many facilities are "restraint free" or use alternative methods to help modify behavior.
risk factors	Factors that have been shown to increase one's odds of developing a disease. In Alzheimer's Disease, the only established risk factors are age, family history and genetics.

senility	Term meaning "old," once used to describe elderly diagnosed with dementia. Today, we know dementia is caused by various diseases (e.g., Alzheimer's) and is not a normal part of aging.
sequencing	Doing things in a logical, predictable order.
shadowing	Following, mimicking, interrupting behaviors that people with dementia may experience.
side effect	An undesired effect of drug treatment that may range in severity from barely noticeable, to uncomfortable, to dangerous. Side effects are usually predictable.
sheltered care	Term used in some states to describe a type of residential setting.
skilled nursing care	Level of care that includes ongoing medical or nursing services.
spinal cord	One of the two components of the central nervous system. The spinal cord is the main relay for signals between the brain and the rest of the body.
stages	Course of disease progression defined by levels or periods of severity.
sundowning	Unsettled behavior often evident in the late afternoon or early evening.
support group	Facilitated gathering of caregivers, family, friends or others affected by dementia for the purpose of discussing issues related to the disease.
suspiciousness/paranoia	Common in Alzheimer patients as their memory becomes progressively worse. It is often seen, for example, when patients believe their glasses or other belongings have been stolen because they forgot where they left them.
synapse	The junction where a signal is transmitted from one nerve cell to another, usually by a neurotransmitter.
synaptic vesicles	Small sacs located in the ends of nerve cell axons that contain neurotransmitters. During activity the vesicles release their contents at the synapse, and the neurotransmitter stimulates receptors on other cells.

 

 

tangles	See "neurofibrillary tangles."
tau protein	The major protein that makes up neurofibrillary tangles found in degenerating nerve cells. Tau is normally involved in maintaining the internal structure of the nerve cell. In Alzheimer's Disease, the tau protein is abnormally processed.
tissue	A group of similar cells that act together in the performance of a particular function, such as muscle or liver tissue.
toxin	A substance that can cause illness, injury, or death. Toxins are produced by living organisms.

vesicle	A small pouch or pouch-like structure (sac); vesicles in nerve cell axons contain neurotransmitters.
vitamins	Various substances found in plants and animals that are required for life sustaining processes.

 

wandering

Common behavior that causes people with dementia to become lost.

zinc

A metal that is essential for proper nutrition. When zinc is mixed with beta-amyloid proteins in a test tube, clumps occur that resemble amyloid plaques. It is unknown if this laboratory finding resembles actual events occurring in brain cells and if zinc plays a role in the development of Alzheimer's Disease.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-888-487-9668 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Advice from an Alzheimer's Patient

By Jeanne Capp, an early stage Alzheimer's patient

• Don't hurry me. Hurrying me tends to make me forget, and then I tend to get confused.
• If I forget something, remind me gently. If I seem to forget that company is coming or that we are due to be somewhere, help me realize that it is okay if we are a little late or that everything needed is not ready.
• Do not keep asking questions. This frustrates me and makes me feel like I am being tested.
• When I forget, either laugh with me or hug me, but please do not try to make excuses for me. When you do that, it makes me angry and I feel that you do not understand what I am feeling inside.
• When I say, "I don't know how to turn on the oven," just come and help me. No words are needed and chances are, tomorrow I may be able to do it on my own.
• When I tell you something "dumb" that I did, please listen and try to understand that what I am really trying to tell you is that I am scared and hurting. I need to be loved and given time to talk about what is happening to me.
• When I am silent and unable to sleep, chances are that I am struggling with my own fears about how this is going to hurt you as time goes on. I am asking myself what is going to happen to me and how we, as a family, are going to cope and survive.
• Try to understand that some days I almost convince myself that there is nothing wrong with me . . . and then there are days when I have no doubt that my head is not working normally. These latter days are the ones when you are most apt to find me down in spirit. Try to understand that I am really finding it difficult to believe that this is really happening to me. The big questions "why?" and "how long?" keep going around in my head.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Feelings

Alzheimer's Disease affects a person's ability to think, communicate, and perform the basic activities of daily living. But like people of all ages, the Alzheimer patient experiences feelings of joy, sadness, fear, anger, and jealousy. As a caregiver, you need to recognize and respond to these feelings. A person with this disease needs to feel valued, worthwhile, and positive about life. Like many people in their later years, the person with Alzheimer's disease must cope with and adjust to many changes - from body image and retirement, to shifts in lifestyle and preparation for disability and death. Many people also look back over their lives and try to make sense of what they've accomplished. Often, for example, they review past relationships and try to make amends. The caregiver can learn to help the person with Alzheimer's disease deal with these issues by understanding the person's reactions to the effects of the disease. You can assist the family member in dealing with feelings by exercising patience, sensitivity, a sense of humor, and by using the following steps:

Action Steps

Treat the "patient" as a person.

• Appreciate and acknowledge the Alzheimer patient as a person. Through words and touch, try to do everything you can to relate to this individual as a valued human being with emotional and spiritual needs.
• Avoid talking about the person. People with Alzheimer's disease are often hurt when caregivers talk about them as if they're in another room. Typical are such comments as these:
  • "She's giving us a lot of trouble."
  • "Yesterday was a bad time for her."
  • "She kept me up all night again." Instead of talking about the person, assume that she understands everything you're saying.
• Call the person with Alzheimer's disease by his or her name. Avoid cruel and dehumanizing descriptions such as "the bed-wetter," "gramps," or "granny." Also avoid isolating the individual from visitors. Communicate slowly and calmly.
• Speak slowly and in simple sentences. Slow down your rate of speech and lower the pitch of your voice.
• Give the person with Alzheimer's time to hear your words and prepare a response. Keep in mind that it can take up to a minute for the person with this disease to respond.
• Keep communication on an adult-to-adult level. Avoid baby talk or demeaning expressions. Smiles and handshakes go a long way to set the tone for adult interactions.
• Communicate one message at a time. The person with Alzheimer's disease can become confused by a long string of messages such as, "Good morning. Let's get dressed and come down and eat our breakfast." Instead, divide the message into sections such as:
  • "Good morning. You need to get up now."
  • "OK, you're up. Now let's get dressed."
  • "OK, why don't we go downstairs now?"
  • "It's time for breakfast."
• Keep in mind that the person with Alzheimer's disease probably can't tell time. Instead of saying, "John will be here at 2 o'clock." Say, "John will be here after your bath."

Be positive and reassuring.

• Be positive, optimistic and reassuring to the person. Use such expressions as "Everything will be OK. Don't worry. We're doing great. We're going to get through this. I'm here to help you." Expressing your feelings will help you release tension and help comfort the person.
• Use comforting and non-controlling statements. Try to identify feelings rather than argue about facts. For example, instead of arguing with the person about going outside, you can agree by saying, "Yes, it would be fun to go outside." Or put limits on the request by saying, "I want to go outside, too. Let's do it after we eat. I'm hungry!" As an alternative, you can distract the person by saying, "Yes, it's nice to go outside. That's a nice sweater you're wearing."
• Give praise for the simplest achievements and successes by making such comments as, "That's great," "You're doing really well," or "Oh, you did such a good job at that."

Tell the person what to expect.

• Prepare the person for what's about to happen. Instead of pulling the patient out of a chair or pushing the patient across the room, make such comments as, "We need to get up now." Then, gently assist the person to get out of the chair or move across the room.
• Provide suggestions and structure. For example, don't ask, "Do you want to take a bath?" Instead, say, "It's time to take your bath now."

Match your actions and words.

• Be aware of your body language. Even though you might use kind and gentle words, the person with Alzheimer's disease will pick up tension in your face and body. Your feelings will come out through the tone of your voice.
• Subtle differences in word choice and sentence structure will probably confuse the person. Use the same words in the event you need to repeat a message. The person with Alzheimer's disease won't see the similarity between the following statements. "Please sit down here," and "Why don't you come here and have a seat?"
• Maintain eye contact, smile, and use touch to comfort and reassure the person.

Help the person remain independent.

• Avoid taking responsibilities away from the person through such comments as, "Here, you can't do that. Give it to me. I'll do it for you." Instead of assuming that the person can't perform certain tasks, put the emphasis on what the person can do.
• Maintain your sense of humor and don't be afraid to kid around and joke with the individual. A person's sense of humor can remain intact during the various stages of the disease.
• Keep in mind that the person with Alzheimer's disease wants to contribute to the family's well-being. Don't be afraid to ask for help and cooperation with such requests as, "Could you please help me put these plates on the table?" The person might take twice as long to perform a task, but will feel the enjoyment of being helpful.

Talk about and name emotions.

• Help the person with Alzheimer's disease label emotions by making such comments as, "You look sad," "This must be really frustrating for you," or "You're really feeling angry right now, aren't you? You know, it's OK to feel angry." Acknowledging an emotion and giving it a label may encourage the person to discuss these feelings further. In addition, don't be afraid to share your feelings with such comments as, "I feel sad, too, but I'm here to help you and we'll get through this together."
• Avoid discouraging the person from talking about difficult and emotional subjects such as dying. Don't reject or dismiss feelings with such comments as, "Oh, you don't need to worry about that," or "That's not going to happen."

Repeat enjoyable activities.

• Remember the value of repetitive activities and exercise. Walking or performing an enjoyable activity such as sorting coins might help distract the person from feelings of anger or depression.
• Create the opportunity to reflect on life. Many patients enjoy going through old photo albums and talking about happy and enjoyable events. You may also want to sing familiar songs that evoke old memories and feelings.
• Allow the person with Alzheimer's to tell stories even if he repeats the same story over and over again. Help the patient explore his feelings with such comments as "You really liked visiting your uncle, didn't you. That was a really happy time for you."

Understanding the person's feelings and frustrations will help the caregiver react sensitively and gently to the needs of the Alzheimer patient.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Lin Noyes, Director, Family Respite Center, Falls Church, Virginia.

Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Indiana; South Central Michigan; Cleveland, Ohio; Dallas, Texas; and Northern Virginia. Other Resources include:

• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
• Howard Gruetzner. Alzheimer's: A Caregiver's Guide and Sourcebook. New York: John Wiley and Sons, 1988.
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

The Importance of Good Communication Skills

Communicating with a person with a dementing illness, such as Alzheimer's disease, can be a terribly difficult task. Often in the early stages of a dementing illness, people have trouble finding the words to express their thoughts, or may be unable to remember the meaning of simple words or phrases; but these problems are usually minor inconveniences or frustrations. The later stages may be much more difficult with language skills quite impaired, resulting in nonsensical, garbled statements, and great difficulty in understanding.

When people cannot comprehend what is being said, or cannot find the words to express their own thoughts, it can be painful, frustrating, and embarrassing for everyone. The following are some suggestions of things to think about when communicating with an impaired person.

Your Approach - You Set the Tone

• Think about how you are presenting yourself. Are you tense? Frowning? Are you being bossy or controlling? People with dementia are often extremely aware of nonverbal signals such as facial expression, body tension and mood. If you are angry or tense, they are likely to become angry, anxious, or annoyed.
• Try a calm, gentle, matter-of-fact approach. You set the mood for the interaction. Your relaxed manner may be contagious.
• Use a non-demanding approach - try humor, cajoling, or cheerfulness. Humor or gentle teasing often helps caregivers through difficult moments. Convincing someone to get out of bed or go to the bathroom is usually easier if you can make a game or joke of it. Ordering or demanding may be much less successful with some people.
• Try using touch to help convey your message. Sometimes touch can show that you care, even when your words don't, or when you are not understood. Some people shy away from being touched, but most find a gentle touch reassuring.
• Begin your conversation socially. Winning the person's trust first can often make a task much simpler. One way of doing this is to spend time chatting before approaching the task at hand. For example, you might spend ten minutes talking about weather, or family members, or some reassuring topic, to help get the person in a relaxed frame of mind. Again, you are creating a pleasant mood.

Things to Think About When You Speak

• Talk to the person in a place that is free from distractions, such as equipment noise, television, or other conversations. People with dementia often have very little ability to screen out distractions.
• Begin conversations with orienting information. Identify yourself, if necessary, and call the person by name. After creating a relaxed atmosphere, explain what it is you propose to do.
• Look directly at the person and make sure you have his or her attention before you begin to speak. If you cannot get the person's attention, wait a few minutes and try again. Move slowly. Gently touch an arm or hand to gain attention, while saying the person's name several times. Be careful not to startle him or her.
• It is important to be at eye level with the person, especially when talking to someone who is very impaired or who is hard of hearing.
• Speak slowly and say individual words clearly. This is particularly important for people with hearing problems or those who are in the later stages of dementia.
• Use short, simple sentences. People with dementia may not be able to remember more than a few words at a time. Pause between sentences and allow plenty of time for the information to be understood.
• Ask simple questions that require a choice of a yes/no answer, rather than open-ended questions. For example, instead of saying, "What would you like to wear today?" you might say, "Do you want to wear this green dress or this red one?" or "Is this the dress you would like to wear today?"
• Use very concrete terms and familiar words. As people become more impaired, they lose the ability to understand abstract concepts. Thus, you may need to say, "Here is your soup at this table," instead of "It's time for lunch." They may also revert to words from childhood or earlier in life, so that "Do you need to go to the bathroom?" may not be understood as easily as "Do you have to pee?"
• Talk in a warm, easygoing, pleasant manner. Try to use a tone of voice that you would like people to use with you.
• Keep the pitch of your voice low. Sometimes when people don't immediately understand us, we have a tendency to shout. This will simply upset the person with dementia and will make communication more difficult.

When Doing a Task Together

• Try to focus on familiar skills or tasks. People with dementing illnesses gradually lose the ability to learn new tasks, but may be able to do familiar work, hobby-related tasks or household chores even when very impaired.
• Give choices, whenever possible. For example, choosing whether to take a bath before or after dinner, or choosing which of two shirts to wear, may help the person continue to feel some sense of control over life.
• Allow plenty of time for the information to be absorbed. People with dementia often need much more time to absorb simple statements or instructions. Allow a moment of silence before gently repeating an instruction. This requires a lot of patience on the part of caregivers.
• Repeat instructions exactly the same way. It may take a number of repetitions before the person responds. If, after allowing for plenty of time, the instructions are still not understood, try using different key words, or demonstrating what you want the person to do.
• Break the task down into simple steps. Most of our daily tasks are very complex activities; the concepts of "getting dressed" or "taking a bath" may be too overwhelming and abstract for a person with a dementing illness. Instead, the person may be able to respond better to small, concrete steps - one part of the task at a time. For example, the first step in getting dressed might be unbuttoning pajamas. The second step might be taking the right arm out of the sleeve. Find out which steps the person is able to do and encourage those. Gently help with steps that are most difficult. Although this technique takes time and practice, doing tasks together can become more successful and pleasant.
• Modify the steps as the person becomes more impaired. You may need to break the tasks into even smaller steps, or you may need to gradually begin doing some of the steps that the person was able to do previously. Again, this takes time and patience on the part of the caregiver, but can be very rewarding for both the person with dementia and the caregiver.
• Praise sincerely for success. We all need to hear that we are doing a good job, and for people who are losing their abilities it may be particularly important. Praise doesn't need to be long or "gushy," but may be a simple "Thank you" or "You did a nice job."

When You Are Having Trouble Being Understood

• Listen actively and carefully to what the person is trying to say. If you do not understand, apologize and ask the person to repeat it. Let him or her know when you do understand by repeating it or rephrasing it.
• Try to focus on a word or phrase that makes sense. Repeat it back to the person and try to help him or her clarify what is being said.
• Respond to the emotional tone of the statement. You may not understand what is being said, but you may recognize that it is being said angrily or sadly. Saying, "You sound very angry," at least acknowledges the feeling, even if you cannot decipher the words.
• Try to stay calm and be patient. Remember the person is not doing this on purpose and is probably even more frustrated than you. Your calmness and patience will help create a caring atmosphere that will encourage the person to keep trying.
• Ask family members about possible meanings for words, names, or phrases which you do not understand. Sometimes people with dementia talk in a kind of code that may make sense to people who have known them for a long time. A name called over and over may be a close friend or relative from the past whose memory is reassuring. "Let's go down that street to my house," may be a very logical way of referring to a long corridor and room, when the names for these places have disappeared from memory. Language from childhood, such as names for bathroom habits or pet names for things, may reappear in the person's vocabulary. While it is helpful to use their words (e.g., "pee" or "tinkle"), it is important to continue to treat them as adults, not children.

Things Not To Do

• Don't argue with the person. This always makes the situation worse. Furthermore, it is important to remember that a person with dementia no longer has the ability to be rational or logical to the extent you do.
• Don't order the person around. Few of us like to be bossed around and the person with dementia is no exception. Even when your words are not understood, your tone of voice will be.
• Don't tell the person what he or she can't do. State directions positively instead of negatively. Instead of "You can't go outside now" try "Let's sit down here and look at these pictures."
• Don't be condescending. It is hard not to use a condescending tone of voice when you are speaking slowly and in short sentences. However, a condescending tone is likely to provoke anger, even if the words are not understood.
• Don't ask a lot of direct questions that rely on a good memory. Often our attempts at being sociable involve asking people about themselves. Remember that people with dementia have memory loss and may feel humiliated or angry if you ask questions they can no longer answer. Try rephrasing. For example, instead of "Who is this in the picture?" say "This must be your daughter." This approach allows the person to reply gracefully and noncommittally if he or she is not sure.
• Don't talk about people in front of them. It is easy to fall into the habit of talking about people in front of them when they can no longer communicate well. It is impossible to know how much someone with dementia understands, and this may vary from moment to moment.

When Verbal Communication Fails

• Try distracting the person. Sometimes simply diverting the person's attention to other activities (e.g., going for a walk, changing the subject, offering a snack, turning on the television) may be enough to diffuse an angry or anxious mood. Try again later.
• Ignore a verbal outburst if you can't think of any positive response. It is much better to ignore angry or agitated statements than to become angry yourself. You might also try apologizing and letting the subject drop, or changing the emotional tone of the conversation. (e.g., making a positive, cheerful comment, instead of an angry reply)
• Try other forms of communicating. There are lots of ways of communicating that don't involve words. Familiar songs, gentle touching, massage, favorite foods, or walking together can often demonstrate concern and affection more effectively than words. These modes of communicating can also help soothe a troubled person and take the edge off difficult moments.

Prepared at Eastern Michigan University in collaboration with the Alzheimer's Association (ADRDA) - Greater Ann Arbor Chapter with a grant from the Department of Mental Health. Authors: Anne Robinson, Beth Spencer, and Laurie White

Copyright September, 1988. These materials may be duplicated with proper acknowledgment.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

You Never Win an Argument with an AD (Alzheimer's Disease) Patient

Have you ever said…

"I've told her not to put things in the trash can, but she doesn't listen."

"He tells me that he wants to go home. This is his home. We've lived here for 35 years. He gets mad at me when I tell him this is home."

"I get frustrated when Mom asks me what day it is. I start to lose my patience when I answer her for the fifth time."

These common phrases are repeated daily by Alzheimer caregivers. Families have a hard time accepting changes in communication with this illness. It is also hard to let go of old habits like arguing or reasoning with your spouse, parent or friend who does not understand what you say.

Remember to…

• Keep in mind that brain changes cause communication problems and irrational behavior. Your loved one is not behaving this way to annoy or irritate you. In fact, he is probably not aware of the impact of his actions.
• Realize you don't always have to be right. For instance, you will never "teach" your mother not to hide things in the wastebaskets. Instead, your family will learn to accept this behavior and check the wastebaskets before emptying them. Pick your battles before you start an argument.
• Don't try to reason with the person. The woman whose husband wanted to go home only frustrated both of them when she tried to explain that they were home. She learned to walk with her husband to the corner and return home. When her husband entered the house, he felt like he was home. It may be necessary to make our loved one's realities conform to ours.
• Distract the AD (Alzheimer's Disease) person instead of confronting him. Perhaps you have hidden the keys to the car, and Dad wants them. Instead of explaining why it isn't a good idea for him to drive, suggest that you'll help him. "I'll help you look for those keys, but first let's sort these clothes. We really need to get this done." Wait for an opportunity to redirect Dad without pushing his concerns aside.
• Be prepared to repeat yourself. When Mom asks a question over and over again, you will have to repeat the answer because of her lack of short-term memory. However, this can also work to your advantage. Distract Mom by offering her some ice cream and directing the conversation another way, or write the answer on a card or message pad.

Courtesy of the Greater San Francisco Bay Chapter

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains , 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-502-4301 or 1-800-272-3900(Helpline)

Challenging Behaviors of Alzheimer's Disease

• Anxiety/Agitation/Assaultiveness
  These behaviors manifest themselves in various ways, including pacing, fidgeting, yelling, throwing objects, refusing help, or hitting. They can also be secondary to tension, to feelings of loss or depression, to changes within the brain itself, to other physical illness, to pain, or to the side effects of medications. Assaultive behavior may even occur in persons who have not demonstrated it in the past.
• Aphasia
  Impairment or absence of speech or written communication due to the progression of the disease.
• Apraxia
  The inability to carry out purposeful movements. The patient may know what to do, but is unable to do it. (Tie shoelaces, wave good-bye or button a shirt.)
• Catastrophic reactions
  Emotionally intense responses to seemingly trivial occurrences. They can appear as sudden mood changes, crying, verbal abuse, and physical violence. Catastrophic behaviors may be a response to overstimulation in the environment. They usually happen when an event overwhelms an individual's ability to think or react.
• Delirium
  A group of symptoms referring to a temporary impairment of mental function. It is characterized by a clouding of consciousness with a reduced capacity to shift, focus and sustain attention. It is manifested by difficulty in sustaining attention to both external and internal stimuli, sensory misperception, and a disordered stream of thought.
  
  Disturbances of sleep-wakefulness and psychomotor activity are present. The individual suffering from delirium has a decreased ability to attend to environmental stimuli and often shows highly disruptive and variable behaviors. Delirium is usually worse at night. Onset is relatively rapid and the course typically fluctuates.
  
  The total duration is acute, usually brief, ranging from hours to days, but can be fatal if delirium is not identified and treated. Delirium can occur alone or concurrently with dementia or other medical conditions. The majority of individuals presenting delirium suffer from a specific physical illness. If the individual decompensates rapidly over a period of several hours to days, there is very likely a superimposed medical problem that must be rapidly identified and treated. Recognizing the difference between dementia and delirium is essential.

• Delusions
  Beliefs that are contrary to fact. They remain fixed or persistent despite all evidence to the contrary.

• Depression
  One of the most common behavior symptoms of AD (Alzheimer's Disease). Various reports suggest that it is present in 15 to 55 percent of persons with AD. Clinical depression is different from ordinary sadness and grief. It may have a biochemical basis in the brain, and its symptoms include difficulty concentrating, apathy, social withdrawal, loss of interest in usual activities, slowness of movements, fatigue, weight loss, and insomnia.
• Hallucinations
  Sensory experiences that cannot be verified by anyone other than the person experiencing them. Any sense may be involved, particularly seeing and hearing.
• Illusions
  Misinterpreted perceptions that usually do not last long, such as when an individual mistakes moving shadows for people or animals.
• Paranoia/Suspiciousness
  Unrealistic, blaming beliefs. Paranoia results from damage to the part of the brain that makes judgments and separates facts from fiction. A dementia person with paranoia will not connect the unrealistic, blaming belief to a realistic belief, no matter how many explanations or clarifications are given by caregivers.
• Restlessness/Wandering
  A common behavior and can be difficult to manage because of its unpredictability. Wandering may result from restlessness and pacing, or getting lost, or may occur with a change in environment.
• Sleep disturbances
  Occurs throughout the course of the disease. A person may actually complain of sleeplessness, or may just be found wandering at night. Sleep disturbances accompany many of the other behavioral symptoms listed above. Some researchers believe that changes taking place within the brain disrupt the normal sleep-wake cycle.
• Sundowning
  An increased frequency or severity of confusion or other behavioral symptoms (often anxiety) late in the day or after dark. It may be a result of fatigue or reduced sensory stimulation (less light or activity). Sundowning is often easier to manage than some of the other symptoms because it occurs at a predictable time of day.
• Verbal noises
  Any vocal behavior which is disturbing to others, for which a meaning or significance is unclear. This may include screaming, repetition of recognizable words, nonsensical verbal noises, talking incoherently, moaning and whistling.

Source: Aronson, M. 1988. Understanding Alzheimer's Disease. New York: Macmillion Publishing Co.

Robinson, A., Spencer, B. and White, L. 1989. Understanding Difficult Behaviors. Ypsilanti, Michigan: Eastern Michigan University.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Combativeness

When an Alzheimer patient becomes combative, angry or agitated, it may be because of frustration. The individual may feel that he's being pushed to do something that simply can't be done. Consider the following factors as possible sources of frustration:

• Dressing - The person who can't get his arm through a sweater may grow increasingly upset and start to thrash around.
• Bathing - The person who's frightened by running water in the bathtub may push away a caregiver who is trying to give him a bath.
• Eating - The person who doesn't like a certain type of food may refuse to eat it.

Keep in mind that the combativeness takes many forms. Sometimes the person may simply try to push your hand away, while at other times the person may resist or strike you.

Deal with combativeness by trying to examine the underlying causes. Consider the following issues:

Physical Causes

• Is the person tired because of inadequate rest or sleep?
• Are mediations such as sedatives and tranquilizers creating side effects?
• Is the person unable to express the fact that he's in pain?

Environmental Causes

• Is the person over-stimulated by loud noises, people or physical clutter?
• Is the environment unfamiliar?
• Does the person feel lost or abandoned by the caregiver?

Poor Communication

• Are you asking too many questions or making too many statements at once?
• Are your instructions simple and easy to understand?
• Is the person picking up on your own stress and irritability?
• Are you making the person more frustrated by being overly negative or critical?
  
  
  

Action Steps

Be on the lookout for frustration.

Look for early signs of frustration in such activities as bathing, dressing, or eating, and respond in a calm and reassuring tone.

Don't take aggression and combativeness personally

Keep in mind that the person isn't necessarily angry with you. Instead, he may misunderstand the situation or be frustrated with his own disabilities.

Avoid teaching.

Offer encouragement, but keep in mind the person's capabilities and don't expect more than he can do. Avoid elaborate explanations or arguments.

Use distraction.

Don't persist in making the person perform a particular task, especially if she has repeatedly been unsuccessful. If you see the person getting frustrated with buttoning a shirt, try to distract her with another activity such as putting on a pair of pants. After a time, you can return to the shirt. Or take the person to a quiet room, have a cup of tea, or go for a walk.

Communicate directly with the person.

Avoid expressing anger or impatience in you voice or physical actions. Instead use positive, accepting expressions such as "please," "thank you," and "Don't worry, everything's going to be fine." In addition, use touch to reassure and comfort the person. For example, you might want to put your arm around the person or give him a kiss. In addition, follow these tips:

• Speak slowly and clearly.
• Use short, simple sentences.
• Approach the patient slowly and from the front.
• Use repetition and frequent reminders.

Decrease your level of danger.

Assess the level of danger - both for yourself and for the person. In other words, if the person becomes combative, ask this question: "How much trouble am I in - and what can I realistically do about it?" Often you can avoid harm by simply taking five steps back and standing away from the person for a short period of time. On the other hand, if the person is headed out of the house and onto a busy street, you need to be more aggressive.

Be conservative in using restraint or force.

Unless the situation is serious, try to avoid physically holding or restraining the person. By fighting with the individual, you'll probably make him even more frustrated and anxious.

Experiment with objects that have a soothing effect.

Some caregivers believe that stuffed animals have a soothing effect on the person, while others find that pets - from cats and dogs, to birds or goldfish - have a calming effect.

Learn from previous experiences.

Try to avoid situations or experiences that make the person combative. For example, if the individual tires easily when she visits with family members, you might want to limit the length of these visits. Try to identify early signs of agitation. For example, restlessness, frustration, fidgeting, or blushing sometimes precedes outbursts.

Restructure tasks and the person's environment.

• Simplify tasks or plan more difficult tasks for the time of the day when the person is at his best.
• Give the person adequate time to respond to your directions or requests.
• Allow the person to make some choices, but limit the total number of choices. Having too many decisions to make about what to eat or wear might be confusing or overwhelming.
• Break down each task into small steps and allow the person to complete one step at a time.
• Keep the environment calm, quiet and free of clutter.
  
  

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, a geriatric psychiatrist and director of the Price Teaching Service and associate professor of psychiatry at the Johns Hopkins University School of Medicine, Baltimore, Maryland.

Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Eastern Massachusetts, South Central Michigan, Cincinnati, Cleveland, Dallas, and South Central Michigan.

Other Resources include:

• Miriam K. Aronson, Ed.D. Understanding Alzheimer's Disease. New York: Scribner's. 1988.
  
  
• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
  
  
• Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company, 1986.
  
  
• Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
  
  
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains , 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter , 402-502-4301 or 1-800-272-3900 (Helpline)

Just the Facts and More: Eating

Many Alzheimer patients have problems with eating. For example, a person might lose his appetite or the ability to evaluate if food is too hot or too cold. In addition, a person might forget that he has eaten and ask you for another meal. Begin by assessing the problem. Ask yourself: "Why is the person having difficulty eating?" The following questions are helpful:

• Physical Difficulties -- Is the problem physical? Sores in the mouth, poor-fitting dentures, gum disease, or dry mouth may make eating difficult. A visit to your physician might be helpful.
• Disease -- Does the person have an additional chronic disease? Intestinal or cardiac problems or diabetes might lead to loss of appetite. Constipation or depression can also decrease appetite.
• Agitation/Distraction -- Is the person agitated or distracted? If agitated, the person probably won't sit still long enough to eat an entire meal. If the person is distracted, you might want to think about how you can reduce distractions in the room.
• Eating Style -- Have you recently changed eating styles? Does the person have a preferred eating style? Some Alzheimer patients who aren't accustomed to sitting down at the table for three full meals may prefer to have several smaller meals or snacks.
• Visual Problems -- Can the person see adequately? An Alzheimer patient who had been losing weight began to eat when she started wearing her glasses at mealtimes.
• Environment -- Are there odors or harsh noises in the room that might interfere with the person's digestion?
• Food Quality -- Is the food appealing - in appearance, smell, and taste?

Once you have evaluated the sources of eating problems, you can take action.

Action Steps

Adapt to the person's food preferences.

Remember that you are dealing with a person who has long-standing personal preferences and tastes. Try to keep these likes and dislikes in mind when you are preparing food. On the other hand, the person may no longer remember her favorite foods.

Try to reduce mealtime confusion.

• Provide a calm environment at mealtimes. Minimize distractions, loud noises, and abrupt movements.
• Offer meals at regular times.
• Make mealtime a pleasant but simple event. For example, put only one item of food on the plate at a time.
• Give the person only one utensil at a time. You may want to omit the knife from the place setting. Avoid using plastic utensils because they may break.
• Avoid patterned plates, tablecloths and placemats that might confuse and distract the patient. In most cases, use plain white plates or bowls and a contrasting placemat.
• Deliver simple, easy-to-understand instructions. For example, "Pick up your fork. Put some food on it. Raise it to your mouth."
• Be patient. Don't criticize the person's eating habits or urge him to eat faster.
• Speak slowly and clearly. Be consistent and repeat instructions in the same words each time.
• Be realistic about going out to eat. Avoid noisy or large restaurants and choose those that are small, comfortable, and familiar. Only you can decide if the person can order directly from the menu. As an alternative, you might want to order for the person.
• Make positive use of distractions. If the person resists eating, take a break, involve her in another activity, and return to eating later.
• Use memory aids to remind the person about mealtimes. You might try a clock with large numbers, an easy-to-read appointment calendar with large letters and numbers, or a chalk or bulletin board for recording the daily schedule.

Minimize problems in chewing and swallowing.

• Avoid foods such as nuts, popcorn, and raw carrots which may get lodged in the throat. Instead grind foods or cut them into bite-size pieces. Pureed and frozen foods can be stored in plastic bags for later use.
• Gently explain that the person should chew the food, eat slowly, and swallow.
• Encourage the person to sit up straight with her head slightly forward. If the person's head tilts backward, move it to a forward position.
• Serve soft foods such as applesauce, cottage cheese and scrambled eggs.
• Serve thicker liquids such as shakes, nectars and thick juices, or serve a liquid along with the food.
• Learn the Heimlich maneuver in order to help the person if choking occurs.

Experiment with solutions to decreased appetite.

• Serve a glass of juice before the meal to stimulate the appetite.
• Prepare some of the person's favorite foods.
• Increase the person's physical activity.
• Plan for several small meals rather than three large meals.
• Give the person plenty to drink - especially in warm weather.
• Consider the use of food supplements such as instant breakfast, eggnog mixes, yogurt and milk shakes.

Assist the person to function independently.

• Serve finger foods or serve the meal in the form of a sandwich.
• Serve food in large bowls instead of plates or use plates with rims or protective edges.
• Use spoons with large handles instead of forks.
• Set bowls and plates on a nonskid surface such as a cloth or towel.
• Use cups and mugs with lids to prevent spilling and fill glasses half full; use straws that bend.
• Use plastic tablecloths, napkins, or aprons to make cleanups easier.
• Gently place the person's hand on or near an eating utensil.
• Show the person how to eat by demonstrating eating behavior or by doing hand-in-hand feeding. After you get the first bite of food to the mouth, the person will often begin to eat.
• Give the person plenty of time to eat. Keep in mind that it can take an hour or more to feed a patient.
• Give the person the opportunity to eat with other family members for as long as possible.

Work to prevent eating and nutrition problems.

• Use vitamin supplements only on the recommendation of a physician. Monitor their use.
• Don't serve steaming or extremely hot foods or liquids. Remember, the person might not be able to tell if the food or beverage is too hot to eat or drink.
• Limit or eliminate highly salted foods or sweets if the patient has a chronic health problem such as diabetes or hypertension.
• Control potential weight gains. If the person always seems hungry, serve smaller portions of food at more frequent intervals. Fill the gaps between regular meals with healthy snacks.
• After the meal is over, check to see that the person swallowed the food and nothing remains in the mouth.
• Restrict portions when appropriate. A person with Alzheimer's may have no concept of how much she has eaten.
• Keep in mind that the person may not remember when or if she ate. If the individual continues to ask about eating breakfast, you might consider serving several breakfasts - juice, followed by toast, followed by cereal.
• Help the person maintain good oral hygiene. If it's difficult to use a toothbrush, try oral swabs. Keep in mind that regular visits to the dentist are important.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RN.C., Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Atlanta, Georgia; Eastern Massachusetts; St. Louis, Missouri; Western New York; South Central Michigan, Columbus, Ohio; Cleveland, Ohio; Northern Virginia; and South Central Michigan.

Other Resources include:

• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
• Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Co. 1986.
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Environment

Alzheimer's patients often can't remember where they are and sometimes see their surroundings as threatening because they are unfamiliar. The reason may not be in the environment, but in the feelings of disorientation that are part of Alzheimer's disease. While most people can easily distinguish among many different noises, colors, or patterns in a room, the person with Alzheimer's is more likely to feel confused or overwhelmed. This kind of overstimulation can make the person feel hostile or worried. For these reasons, you need to create a calm, quiet, familiar, enjoyable, comfortable, and organized home environment.

If the person feels safe and secure, you might be able to better manage problems of wandering, anger, or agitated behavior. Keep in mind that something as simple as rearranging the living room furniture or stepping into a neighbor's kitchen might be unsettling to the person with Alzheimer's. A familiar, well-organized living area helps both you and the patient. In looking at your living environment, you should consider some of the following tips.

Action Steps

Focus on consistency.

• Strive for consistency. Keep furniture in the same place.
• Help the person maintain a connection to the past with such familiar objects as old framed photographs, a favorite chair, cabinet or lamp, a piece of clothing such as a hat, or a wall hanging.

Use color and contrasts.

• Work to achieve a calming effect through color. Instead of relying on bright primary colors such as stark white, yellow, orange, or red, use more soothing pastel shades such as peach, pink, beige, ivory, and light blues, greens and lavenders. In addition, use flat paint rather than semi-gloss or high gloss to prevent glare.
• Use contrast. A person with Alzheimer's disease might not be able to distinguish between an off-white wall and a beige door or handrail. For this reason, you may want to have light walls and dark doors and handrails.

Pay attention to flooring.

• Keep floor surfaces uncomplicated. The person might perceive checkerboard linoleum squares as holes and certain patterns as cracks to be avoided.
• Use flooring that cuts down on glare. A shiny floor might prevent the person from seeing obstacles in his path. Some of the newer textured vinyls cut down on glare and are also less slippery.
• Consider using carpeting to help absorb noise, or to prevent slipping. Because of problems with incontinence, some caregivers eliminate carpeting on the floor and run it part way up the wall.

Limit distractions.

• Limit distractions and control noise. Provide soft, enjoyable background music and include some of the individual's favorite songs. In addition, control excessive switching of television channels and ringing of telephones.
• Avoid lighting that casts shadows and might disturb the patient. Whenever possible, use natural light and focus it directly on the area where it is needed.

Consider special furniture.

• Find nonabsorbent material to cover furniture or buy a comfortable recliner. If you purchase a special chair, make sure it has stable arms that extend past the seat so the patient can get up easily.

Orient the person.

• Experiment with labels, pictures, and numbers that help orient the person and understand where he is.
• Take responsibility for safety. Keep pathways clear and be especially aware of the dangers of cluttered furniture and throw rugs. In addition, use locks on doors and cupboards, and hidden switches or controls for the stove, thermostat and hot water heater.

Wall coverings make a difference.

• Use wall hangings made of various textured materials. Many people with Alzheimer's enjoy feeling textured materials such as yarn or wool and find these decorations less disorienting than those made of mirrors or glass.
• Avoid small, distracting wallpaper prints. In one nursing home, residents mistook the vines in a wallpaper pattern for snakes and began to beat on the wall. The individual might also try to pick flowers off the wallpaper.

Be aware of plants.

• Use house plants for decoration, especially if they have been an important part of the person's life, but first make sure that the plants are nontoxic.
• Consider the backyard or patio as part of the environment. Give the person an opportunity to garden, walk, or work outdoors in a safe, supervised area.

Pets in the house.

• Use pets as part of the environment. Many people with Alzheimer's disease find great pleasure in watching fish or a bird. Just make sure that you supervise the activity and keep the aquarium or cage locked. Also keep in mind that the person might not be able to assist in caring for the pets.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Barbara Sand, RN, MSN, Faculty, College of Nursing, University of Nebraska, Lincoln, Nebraska.

Other Resources include:

• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
• Howard Gruetzner. Alzheimer's: A Caregiver's Guide and Sourcebook. New York: John Wiley and Sons, Inc., 1988.
• Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Hallucinations

Understanding the difference between hallucinations and delusions is important. A delusion is defined as a false idea, sometimes originating in a misinterpretation of a situation. When an individual has a delusion, she may think that family members are stealing from her or that she is in another place when she is actually still in her own home.

A hallucination, in contrast, is a false perception of objects or events, and is sensory in nature. When a person with Alzheimer's has a hallucination, she can see, hear, smell, taste, or even feel something that isn't really there.

Hallucinations are caused by changes within the brain that result from Alzheimer's disease. Hallucinations are visual and auditory. The person may see the face of a former friend in a curtain or she may see insects crawling on her hand. In other cases, the person may hear people talking to her and may even talk to the imagined person.

Hallucinations can be frightening to the person and the caregiver. On some occasions, the individual may see threatening images or just ordinary pictures of people, situations or objects from the past. Although you can create an environment to manage wandering, you won't be able to control the person' hallucinations or prevent them from occurring. Here are some ideas to follow for handling a person with hallucinations.

Action Steps

 

Obtain medical guidance.

• Ask a physician to evaluate the person to determine if medication is needed or might be causing the hallucinations. In some cases, hallucinations are caused by schizophrenia, a disease different from Alzheimer's.
• Have the person's eyesight or hearing checked or make sure that the person wears her glasses or hearing aid on a regular basis.
• The physician can look for physical disorders such as kidney or bladder infections, dehydration, intense pain, or alcohol or drug abuse. These are conditions that might cause hallucinations. If the physician prescribes a medication, watch for such symptoms as oversedation, increased confusion, tremors or tics.

Assess and evaluate.

• Assess the situation and determine whether or not the hallucination is a problem for you or for the individual. Is the hallucination upsetting to the person? Is it leading her to do something dangerous? Does the sight of an unfamiliar face cause her to become frightened? If so, react calmly and quickly and reassuring words and comforting touching.

Respond with caution.

• Be cautious and conservative in responding to the person's hallucinations. If the hallucination doesn't cause problems for you, the person or other family members, you may want to ignore it.
• Don't argue with the person about what she sees or hears. Unless her behavior becomes dangerous, you might not need to intervene.

Offer reassurance.

• Reassure the person with kind words and a gentle touch. For example, you might want to say: "Don't worry, I'm here. I'll protect you. I'll take care of you," or "I know you're worried. Would you like me to hold your hand and walk with you for awhile?"
• Gentle patting may turn the person's attention toward you and reduce the hallucination.
• Look for the reasons or feelings behind the hallucination and try to find out what the hallucination means to the individual. For example, you might want to respond with words such as these: "It sounds as if you're worried" or I know this is frightening for you."

Use distraction.

• Suggest that the person come with you on a walk or sit next to you in another room. Frightening hallucinations often subside in well-lit areas where other people are present.
• You might also try to turn the person's attention to other features of the room. Other distractions include music, conversation drawing, looking at photos or pictures, or counting coins.

Respond honestly.

• Keep in mind that the person may sometimes ask you about the hallucination. For example, "Do you see him?" or "Can you hear the children laughing?" You may want to answer with words such as these: "I know that you see something, but I don't see it." In this way, you're not denying what the person sees or hears, and you won't be getting involved in an argument.

Check out the reality of the situation.

• Ask the person to point to the area where he sees or hears something. Glare from a window may look like snow to the patient and dark squares on a tiled floor may look like dangerous holes.

Modify the environment.

• If the person looks at the kitchen curtains and sees a face, you may be able to remove, change or close the curtains.
• Check the environment for noises that might be misinterpreted, for lighting that casts shadow, or for glare, reflections or distortions from the surfaces of floors, walls, and furniture.
• If the person insists that she sees a strange person in the mirror, you may want to cover up the mirror or take it down. It's also possible that the person doesn't recognize herself.
• On other occasions, you may want to turn on more lights and make the room brighter.

As a caregiver, you can ease the fears of the person with Alzheimer's disease by using words that are calm, gentle and reassuring. Remember that the hallucination is very real to the individual with the disease. Your goal is to support the person's feelings without agreeing with the hallucination.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, a geriatric psychiatrist and director of the Price Teaching Service and associate professor of psychiatry at the Johns Hopkins University School of Medicine, Baltimore, Maryland.

Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Indiana; Eastern Massachusetts; South Central Michigan; and Cleveland and Greater Youngstown, Ohio.

Recognition is also extended to the State of New Hampshire Division of Elderly and Adult Services of the Department of Health and Human Services.


Other Resources include:

• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
• Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Safety

Sometimes the patient with Alzheimer's disease may feel confused and frightened. By creating safe and comfortable surroundings, you can help the person feel more relaxed and less overwhelmed. Keep in mind that the individual's behavior can influence the safety and security of other family members and residents. By adopting a safety first attitude, everyone feels more comfortable and secure. As you assess the environment, try to look at the world through the patient's eyes. A person with Alzheimer's can't understand the meaning of many actions and behaviors. For example, the patient might not remember why it's important to dress warmly in cold weather or why eating moldy foods is unsafe. Before you introduce specific safety precautions into your living area, consider the following points:

Focus on prevention, not teaching.

Rather than trying to teach or retrain the person to do things safely, you might be more successful by taking preventive action. For example, to guard against fires or accidental burnings, you may want to remove the knobs from your stove.

Take an adult approach.

Keep communication on an adult level. Help the person understand such safety hazards as smoking, and then work with him to change his dangerous behavior. You may need to take action by removing cigarettes or lighters, as the Alzheimer patient may forget how smoking can be dangerous.

Be patient and slow down.

Keep in mind that many accidents occur when the person with Alzheimer's is rushed. It takes time - sometimes more than a minute - for the person to understand or remember what to do or where to go. As the disease progresses, basic activities of daily living will probably consume even more of your time.

Simplify routines.

Keep in mind that many accidents occur in the area of personal care, involving activities of bathing, toileting, dressing, or eating. You can help avoid accidents by breaking down complicated procedures, guiding the person through a simple, step-by-step process, and giving the individual enough time to complete each task.

Create emergency plans.

Prepare a list of emergency phone numbers and addresses for the local police and fire departments. Include numbers for hospitals and poison control helplines.

Do what you think is best.

Rely on your common sense and do what you think is in the individual's best interests. Tradeoffs may be necessary in balancing the person's safety versus fulfilling the patient's privacy and need for independence.

Be reasonable in your approach to safety.

Be realistic about what you can do. You'll never be able to anticipate every risk or prevent every problem. In addition, there's no way you can experience the world in the same way as the person with the disease.

Action Steps

Be careful about any substance taken through the mouth.

Because the person with Alzheimer's doesn't understand the consequences of ingesting or eating foreign substances, poisoning or choking is a real threat. A patient might forget when medication was taken and, as a result, take twice as much medication or not take the medication at all. There are several steps you can take:

• Purchase locks for kitchen cabinets that contain dangerous substances such as cleaning fluids; or move these substances to another location. Secure garages, basements and workrooms where toxic chemicals are kept.
• Maintain a clean refrigerator. Keep in mind that the individual may not be able to distinguish between rotten food and edible food. Be prepared for the unusual. People with Alzheimer's have been known to eat such items as small rocks, dirt, and plants, flowers, and bulbs. Some caregivers remove toxic plants such as poinsettias or mistletoe from the home.
• Recognize that people with Alzheimer's are unable to distinguish hot from warm or cool from cold. To prevent burning, test the temperature of food before serving it.
• Be cautious about the bathroom medicine cabinet and toilet articles. Lock all medications away from the person.

Rid your house of guns.

Although a person with Alzheimer's might have once been able to handle a gun, serious accidents can occur. The best course of action is to lock the gun in a cabinet or drawer, or remove the gun from the house. Don't allow the patient unsupervised access to a gun.

Control alcohol.

Alcohol can have a variety of negative effects on an Alzheimer patient. Monitor the person's alcohol intake and contact your physician for advice. Alcohol should not be taken with certain medicines.

Be cautious about knives, appliances and electrical devices.

• The person who once enjoyed working in the kitchen, basement or woodshed may no longer remember how to safely operate such appliances as a toaster oven, stove, coffee maker or such equipment as power tools, lawn mowers, or the barbecue. For example, a person who can't remember how to use a can opener may pick up a knife and start to jab at the can.
• Try to distract the person from working in the kitchen alone or encourage him to come in when you are working or preparing food.
• Many caregivers have learned that taking such bedtime precautions as locking up knives and taking the knobs off the stoves prevent accidents. If the person can't see a device or appliance, it may not pose a problem.
• You might also want to turn off the gas and electricity in areas that could be dangerous.
• Perform monthly checks of fire extinguishers and smoke alarms.

Take precautions about temperature, heat and cold.

Keep in mind that the person with Alzheimer's can't judge temperature. Often the individual may forget about the dangers of stoves, curling irons, or space heaters. In addition, the person might have a different sensitivity to heat or cold, and might not react to heat or cold quickly enough to prevent an accident. To avoid scalding, consider setting your home water heater at 140 degrees and help the person mix hot and cold water for bathing.

Take special precautions in the bathroom.

Mirrors, high-gloss surfaces, and glass can be frightening to the person with Alzheimer's disease. Some caregivers choose to cover mirrors to reduce the person's feeling of confusion. Use an electric razor for safety precautions. To reduce the chances for electric shock, remove all remote electrical appliances from the bathroom. To prevent falls, use such devices as grab bars, bath seats and commode chairs.

Use camouflage and other devices to prevent wandering.

To discourage the person from leaving an area, consider using such devices as safety door knobs, locks that are placed high and out of the patient's sight, a black rug on the floor in front of a door, a cloth or drape hung over a door, a Dutch-door, or electronic alert alarms.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Lisa P. Gwyther, ACSW, educational director of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University, Durham, North Carolina. Special thanks to the following Chapters of the Alzheimer's Association: South Central Michigan and Cleveland, Ohio.

Other resources include:

• Alzheimer's Association, Atlanta Chapter, Guide to Home Safety for Caregivers of Persons with Alzheimer's Disease. Atlanta, GA, 1990.
• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
• Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company 1986.
• Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Sexuality

Sometimes the patient with Alzheimer's disease may feel confused and frightened. By creating safe and comfortable surroundings, you can help the person feel more relaxed and less overwhelmed. Keep in mind that the individual's behavior can influence the safety and security of other family members and residents. By adopting a safety first attitude, everyone feels more comfortable and secure. As you assess the environment, try to look at the world through the patient's eyes. A person with Alzheimer's can't understand the meaning of many actions and behaviors. For example, the patient might not remember why it's important to dress warmly in cold weather or why eating moldy foods is unsafe. Before you introduce specific safety precautions into your living area, consider the following points:

Focus on prevention, not teaching.

Rather than trying to teach or retrain the person to do things safely, you might be more successful by taking preventive action. For example, to guard against fires or accidental burnings, you may want to remove the knobs from your stove.

Take an adult approach.

Keep communication on an adult level. Help the person understand such safety hazards as smoking, and then work with him to change his dangerous behavior. You may need to take action by removing cigarettes or lighters, as the Alzheimer patient may forget how smoking can be dangerous.

Be patient and slow down.

Keep in mind that many accidents occur when the person with Alzheimer's is rushed. It takes time - sometimes more than a minute - for the person to understand or remember what to do or where to go. As the disease progresses, basic activities of daily living will probably consume even more of your time.

Simplify routines.

Keep in mind that many accidents occur in the area of personal care, involving activities of bathing, toileting, dressing, or eating. You can help avoid accidents by breaking down complicated procedures, guiding the person through a simple, step-by-step process, and giving the individual enough time to complete each task.

Create emergency plans.

Prepare a list of emergency phone numbers and addresses for the local police and fire departments. Include numbers for hospitals and poison control helplines.

Do what you think is best.

Rely on your common sense and do what you think is in the individual's best interests. Tradeoffs may be necessary in balancing the person's safety versus fulfilling the patient's privacy and need for independence.

Be reasonable in your approach to safety.

Be realistic about what you can do. You'll never be able to anticipate every risk or prevent every problem. In addition, there's no way you can experience the world in the same way as the person with the disease.

Action Steps

Be careful about any substance taken through the mouth.

Because the person with Alzheimer's doesn't understand the consequences of ingesting or eating foreign substances, poisoning or choking is a real threat. A patient might forget when medication was taken and, as a result, take twice as much medication or not take the medication at all. There are several steps you can take:

• Purchase locks for kitchen cabinets that contain dangerous substances such as cleaning fluids; or move these substances to another location. Secure garages, basements and workrooms where toxic chemicals are kept.
  
• Maintain a clean refrigerator. Keep in mind that the individual may not be able to distinguish between rotten food and edible food. Be prepared for the unusual. People with Alzheimer's have been known to eat such items as small rocks, dirt, and plants, flowers, and bulbs. Some caregivers remove toxic plants such as poinsettias or mistletoe from the home.
  
• Recognize that people with Alzheimer's are unable to distinguish hot from warm or cool from cold. To prevent burning, test the temperature of food before serving it.
  
• Be cautious about the bathroom medicine cabinet and toilet articles. Lock all medications away from the person.

Rid your house of guns.

Although a person with Alzheimer's might have once been able to handle a gun, serious accidents can occur. The best course of action is to lock the gun in a cabinet or drawer, or remove the gun from the house. Don't allow the patient unsupervised access to a gun.

Control alcohol.

Alcohol can have a variety of negative effects on an Alzheimer patient. Monitor the person's alcohol intake and contact your physician for advice. Alcohol should not be taken with certain medicines.

Be cautious about knives, appliances and electrical devices.

• The person who once enjoyed working in the kitchen, basement or woodshed may no longer remember how to safely operate such appliances as a toaster oven, stove, coffee maker or such equipment as power tools, lawn mowers, or the barbecue. For example, a person who can't remember how to use a can opener may pick up a knife and start to jab at the can.
  
• Try to distract the person from working in the kitchen alone or encourage him to come in when you are working or preparing food.
  
• Many caregivers have learned that taking such bedtime precautions as locking up knives and taking the knobs off the stoves prevent accidents. If the person can't see a device or appliance, it may not pose a problem.
  
• You might also want to turn off the gas and electricity in areas that could be dangerous.
  
• Perform monthly checks of fire extinguishers and smoke alarms.

Take precautions about temperature, heat and cold.

Keep in mind that the person with Alzheimer's can't judge temperature. Often the individual may forget about the dangers of stoves, curling irons, or space heaters. In addition, the person might have a different sensitivity to heat or cold, and might not react to heat or cold quickly enough to prevent an accident. To avoid scalding, consider setting your home water heater at 140 degrees and help the person mix hot and cold water for bathing.

Take special precautions in the bathroom.

Mirrors, high-gloss surfaces, and glass can be frightening to the person with Alzheimer's disease. Some caregivers choose to cover mirrors to reduce the person's feeling of confusion. Use an electric razor for safety precautions. To reduce the chances for electric shock, remove all remote electrical appliances from the bathroom. To prevent falls, use such devices as grab bars, bath seats and commode chairs.

Use camouflage and other devices to prevent wandering.

To discourage the person from leaving an area, consider using such devices as safety door knobs, locks that are placed high and out of the patient's sight, a black rug on the floor in front of a door, a cloth or drape hung over a door, a Dutch-door, or electronic alert alarms.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Lisa P. Gwyther, ACSW, educational director of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University, Durham, North Carolina. Special thanks to the following Chapters of the Alzheimer's Association: South Central Michigan and Cleveland, Ohio.

Other resources include:

• Alzheimer's Association, Atlanta Chapter, Guide to Home Safety for Caregivers of Persons with Alzheimer's Disease. Atlanta, GA, 1990.
  
• David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
  
• Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company 1986.
  
• Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
  
• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Sundowning and Shadowing

People with diseases such as Alzheimer's often have behavior problems in the late afternoon and evening. They may become demanding, suspicious, upset or disoriented, see or hear things that are not there and believe things that aren't true; they may pace or wander around the house when others are sleeping.

Sundowning

While experts are unsure how or why this behavior occurs, they suspect that the problem of late afternoon confusion; which is sometimes called "sundowning," or "sundown syndrome," may be due to these factors:

• The person with Alzheimer's can't see well in dim light and becomes confused.
• The impaired person may have a hormone imbalance or a disturbance in his/her "biological clock."
• The person with Alzheimer's tires at the end of the day and is less able to cope with stress. The person is involved in activities all day long and grows restless if there is nothing to do in the late afternoon or evening.
• The caregiver communicates fatigue and stress to the person with Alzheimer's and the person becomes anxious.

Action Steps for Sundowning

 

Try these ways to lessen the behaviors of "sundowning":

• Make afternoon and evening hours less hectic. Schedule appointments, trips, and activities such as baths or showers early in the day.
• Help the person to use up extra energy through exercise. You may want to arrange at least one or two brisk walks during the day for the person who tends to pace or wander in the evening.
• Control the person's diet. Reduce foods and beverages with caffeine (chocolate, coffee, tea, and soda), or restrict them to the morning hours to reduce agitation and sleeplessness. An early dinner or late afternoon snack may also help.
• It is important to provide regular activities and you may want to discourage napping during the day if sleeplessness during the night is a problem.
• You may want to reduce the level of noise from radios, televisions or stereos, control the number of people who visit in the evening hours, or confine noisier family activities to another area of the house.
• Consult with your physician. Your physician may be able to prescribe medication to encourage sleep. At the same time, your physician can check for signs of depression, or for physical problems, such as prostate difficulties that might lead to frequent urination. This condition can cause pain and make sleep uncomfortable.
• Make it easy for the person to use the bathroom. Consider a bedside urinal or commode, or encourage the person to use the bathroom before going to bed.
• Keep rooms adequately lit. Good lighting may reduce the person's confusion. A nightlight may prevent the person from becoming agitated in unfamiliar surroundings.

Remain flexible and consider the person's needs.

• While people with Alzheimer's may find it difficult to sleep in their beds, they may fall asleep more easily on the living room couch or in a reclining chair.
• Reassure and comfort the person. Tell the person experiencing sundowning what time it is and what is going on in the house. Let the person know you are there and will remain there. Try to involve the person in a meaningful activity such as setting the table, folding towels, doing dishes, or sweeping the floor.
• Avoid arguing or asking for explanations. The person may not know what's wrong or be unable to tell you if he does. Keep in mind that the person with Alzheimer's has no control over annoying, repetitive behavior. Confusion and restlessness occur because the brain can no longer sort out cues in the environment.

Remember to care for yourself.

• Make sure you get adequate rest. Just because the person with Alzheimer's can't sleep at night doesn't mean you should go without sleep. Arrange for another family member to supervise the person at night; or arrange the room so that it is safe enough (and has locked doors) to let the person stay awake and pace there while you nap or sleep in another room.

Shadowing

"Sundowning" is often accompanied by "shadowing," where the person with Alzheimer's follows or mimics the caregiver, or talks, interrupts, and asks questions repeatedly. At times, the person may become upset if the caregiver wants to be alone. While shadowing and other forms of agitation vary from person to person, you may be able to manage the behavior by following these steps:

Action Steps for Shadowing

Examine factors that encourage agitation.

Consider these questions:

• How long does the behavior last?
• At what time of day does it occur?
• Is the behavior triggered by certain people or surroundings?
• What seems to calm the impaired person?

Once you develop answers to these questions, you may be able to avoid the situations that bring about agitation and introduce activities that help calm the person with Alzheimer's.

Protect your privacy.

You may want to install a childproof doorknob on the bathroom door or use a timer and reassure the person by saying, "I'll be back when the timer goes off."

Try to keep the person occupied.

Find simple, repetitious activities to occupy the person even if you could do them better on your own. Possibilities include folding the wash, dusting, stacking papers or magazines, stuffing envelopes, or winding a ball of yarn. You could also provide the Alzheimer's person with headphones for listening to calming music.

Consider "gum therapy" or "cereal therapy."

If the person with Alzheimer's is able to chew and swallow easily, you may want to give him/her sugarless gum. Consider providing the person with a nonbreakable bowl of high-fiber, low-sugar cereal. By having something to snack on, the person may be less inclined to talk or ask questions.

Rely on the ideas of support groups.

Caregivers are always discovering new ways to deal with behaviors such as shadowing and sundowning and are happy to share them.

A better understanding of the feelings of the person with Alzheimer's disease, such as fear, frustration, and anger, may help you accept the resulting behaviors. Providing reassurance and helping your loved one respond to his/her changing environment can help you mange the person's behavior.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, MPH, Associate Professor of Psychiatry, Director of the Psychogeriatric Unit, and Director of the T. Rowe and Eleanor Price Teaching Service of the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine, Baltimore, Maryland. Dr. Rabins is the co-author, with Nancy L. Mace, MA, of The 36-Hour Day (Baltimore: Johns Hopkins University Press, 1991).

Special thanks to the following Chapters of the Alzheimer's Association: Eastern Massachusetts and Flint & Genesee Counties, Michigan.

Other Resources include:

• Lin E. Noyes. Caregiving at a Glance. Family Respite Center, Falls Church, Virginia.
• "Steps to Selecting Activities for the Person with Alzheimer's Disease," Alzheimer's Association, 1992.
• "Documentation Guide," Alzheimer's Association, revised 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Wandering

There are many reasons why an Alzheimer patient wanders or walks away from home or a well-known path or area. As a first step, try to determine the reasons behind wandering by asking these questions:

Medication

Some medications have side effects that result in confusion and restlessness. Is the patient on such medication? If so, consult your physician.

Stress

Is the person trying to handle stress, noise, unpleasant people, crowding, or isolation? If so, consider changing the situation.

Time confusion

Does the person become confused during certain parts of the day, such as the middle of the night or early evening? Does the person claim that people have been gone for days or weeks and then searches for them?

Basic needs

Is the person looking for something specific such as food, drink, the bathroom, or companionship?

Restlessness

Does the person have enough movement and activity during the day? Is it possible that the person wanders in order to get up and move around?

Lack of recognition

Is the person in a new or changed physical environment that makes him want to search for familiar objects, surroundings or people?

Fear

Is the person trying to escape from something frightening? Is the person experiencing a delusion or hallucination, or has the person simply misinterpreted sights and sounds?

Past behavior

Is the person trying to meet former obligations involving a former job, home, friend, or family member?

Other factors that may contribute to wandering include medical conditions such as stroke or other factors such as consumption of alcohol, changes in the weather, or feeling abandoned, useless or helpless. Wandering may be frustrating and irritating for caregivers, but it becomes a problems only when the person moves into an unsafe or unhealthy area or climate, puts others at risk or invades others' property.

For this reason, many people who care for Alzheimer patients decide to overlook wandering behavior until it becomes dangerous to the patient and to others. They may even permit the person to wander within safe boundaries or follow the individual on special outings.

Action Steps

 

Be Prepared.

Be aware that wandering may or may not happen. There is no way to predict who will wander or when and how it might happen. Some people never get lost and others get lost frequently. The best advice is to be prepared. If the person has a daily exercise routine and hasn't yet wandered, you needn't be overly concerned. However, once the person begins to wander or gets lost, you should watch him more closely.

Encourage movement and exercise.

Allow the person to move within safe areas or make a shared exercise such as walking part of your daily routine. Although walking in a circle might seem unusual, keep in mind that physical activity - from walking and sweeping, to rolling yarn or folding clothes - is a positive experience for the person with Alzheimer's.

Be objective.

Don't take the person's wandering behavior personally. The individual is probably trying to make sense of a world that no longer seems predictable.

Be aware of hazards.

Remember that places that look safe might be dangerous for the person with Alzheimer's. For this reason, you should review the environment around your home for possible hazards, such as fences and gates, bodies of water, swimming pools, dense foliage, tunnels, bus stops, steep stairways, high balconies, and roadways where traffic tends to be heavy.

Secure your living area.

Do whatever you can to keep your home safe and secure. Place locks out of the normal line of vision - either very high or very low - on doors. In addition, use a double bolt door lock, keeping the key handy for emergencies. Also use a childproof door knob that prevents the person with Alzheimer's from opening the door. Other effective safety actions include the following:

• Put hedges or fences around your patio or yard;
• Place locks on gates;
• Consider electronic buzzers, infrared electronic eye alarms or chimes on your doors;
• Camouflage some doors with a screen or curtain, or put a two-foot square of a dark color in front of the doorknob;
• Use a recliner or rocking chair; the person may then need assistance to get up;
• Use nightlights, signs, and familiar objects to help the person move around in a safe area;
• Put gates at dangerous stairwells.

Communicate with the person.

Remind the person that you know how to find him and that he is in the right place. If possible, take the person for rides in cars or buses in addition to providing regular activity and exercise. Continually reassure the person, who may feel lost or abandoned.

Identify the patient.

Investigate local the Alzheimer Chapter's identification program. You may want to invest in a discrete identification bracelet or locket that includes the person's name, telephone number, memory problem, and medical condition. Some experts even recommend putting identification on the person's dentures or attaching a sensor to the patient's ankle or wrist. In addition, choose bright-colored clothing and mark it with sew-on or iron-on label, permanent marker, or reflective material. Also identification may be placed on the person's shoes, eye glasses and keys.

Involve your neighbors.

Inform your neighbors of the person's condition and keep a list of their names and telephone numbers handy. Although neighbors can be helpful in guiding the person home, you'll probably want to teach them how to approach the person with Alzheimer's disease by using these steps:

• Approach the person from the front;
• Introduce yourself and call or ask his/her name;
• Gently look for or ask to see identification;
• Offer help and reestablish the day, date, and time;
• Avoid pulling or pushing the person;
• Report the patient found

Involve the police.

Some police departments keep a photo and fingerprints of people with Alzheimer's on file. Many local Alzheimer's Association Chapters sponsor some kind of identification program to help with wandering patients. If a person with Alzheimer's become lost, take a photo and an article of unwashed, worn clothing in a plastic bag to the police. Also have data on the following items:

• Age
• Hair color
• Blood type
• Eye color
• Identifying marks
• Medical condition
• Medication
• Dental work
• Jewelry
• Allergies
• Complexion

Offer suggestions about where the police might find the patient, such as old neighborhoods, former work places, or favorite places.

Be prepared for other modes of wandering.

Although most wandering takes place by foot, some individuals with Alzheimer's disease have been known to drive 300 miles - sometimes in an automobile that belongs to someone else. You can prevent these problems by keeping car keys out of sight or by temporarily disabling the car by removing its distributor cap.

Special Recommendations for Long-term Care Facilities

 

Use medication with caution.

Keep in mind that no medication controls wandering. If medicated, some patients actually become more agitated. Other medications bring about complications related to immobility.

Respond to wanderers as individuals.

Keep the patient busy in full view of the staff and help the patient develop a walking route around the facility.

Develop a procedure for handling missing residents.

Be sure to include such steps as searching the facility, calling the administrator and notifying a family member who will then notify the police. In some cases, the facility may need to notify the police.

Inform people about how to approach a patient.

Invite local police, firefighters/paramedics, business people and family members to inservice workshops on how to help wanderers. Help them understand that wanderers should be approached calmly, reassured and guided back to the facility.

Resources

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Lisa P. Gwyther, ACSW, educational director of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center of Duke University, Durham, North Carolina.

Special thanks to the following Chapters of the Alzheimer's Association: Honolulu, Hawaii; Indianapolis Area, Indiana; Topeka, Kansas; Eastern Massachusetts; Southeastern Wisconsin and South Central Michigan.

Other Resources include:

• Lisa P. Gwyther. "Care of Alzheimer's Patients: A Manual for Nursing Home Staff." Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.

(Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.)

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Possible Causes of Challenging Behavior

• Physical/Emotional Health
  • Medication
  • Impaired hearing and/or vision
  • Acute illness
  • Chronic illness
  • Dehydration
  • Constipation
  • Depression
  • Fatigue
  • Physical discomfort

• Environment
  • Too large
  • Too much clutter
  • Excessive stimulation
  • No information or cues given
  • Poor sensory environment
  • Unstructured environment
  • Unfamiliar environment

• Task
  • Too complicated
  • Too many combined steps
  • Not modified for increasing impairments
  • Task may be unfamiliar
    Hint: Try first tasks learned in childhood.

• Communication
  • Look directly at the person
  • Speak slowly
  • Use short sentences
  • Use concrete / familiar terms
  • Ask "yes" or "no" questions
  • Talk in a warm, easygoing manner
  • Keep voice-pitch low
  • Do not argue
  • Listen to person with AD (Alzheimer's Disease)
  • Try to stay calm and be patient

Source: Lela Knox Shanks, 1994

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Safe Return

What Would You do if Your Loved One Became Lost?
Safe Return

 

For safety and peace of mind

The Alzheimer's Association's Safe Return program was created to assist emergency services and private citizens identify people with Alzheimer's disease and help them return home quickly.

Safe Return provides:

Assistance in locating a missing person
When a person registered in Safe Return is lost, the family can contact the program's emergency 800 number. Callers receive guidance on searching the area, contacting the police, and reporting the person missing. If necessary, a "missing person" notice is created and distributed in areas where the person may have traveled. Safe Return stays in contact if a search is initiated and offers advice to caregivers afterward.

Help for a lost or disoriented individual
Someone who finds a lost person can call the national 800 number listed on the person's Safe Return identification item (jewelry, clothing label or wallet card). Safe Return operators are available to help 24 hours a day, seven days a week. Registration with Safe Return provides:

• Identification items for the memory-impaired person, including a bracelet or necklace, clothing labels and a wallet ID card (also available for caregivers).
• A nationwide, toll-free 800 number to contact when someone is lost or found.
• Registration of important contact information in a national computer database.
• Information about how to reduce wandering and what to do when a loved one becomes lost.
• Connection to more than 83 community-based Alzheimer's Association chapters across the country who provide information and support to families.

Registration
Contact your local chapter (see below) to request a registration form. A nominal registration fee helps offset the cost of registration and identification items.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter , 402-502-4301 or 1-800-272-3900 (Helpline)

The Six "R's" of Behavior Management

• Restrict
  Try to get the person to stop what he is doing, especially if the person might harm himself or others. Remember, though, trying to make the person stop, may upset him more.
• Reassess
  Ask yourself:
  
  • Might a physical illness or drug reaction be causing the problem?
  • Might the person be having difficulty seeing or hearing?
  • Is something upsetting him?
  • Could the annoying person or object be removed?
  • Might a different approach upset the person less?
• Reconsider
  Ask yourself how things must seem from the patient's point of view. People with dementia are often unaware of the extent of their impairment. When you try to bathe or dress someone who does not understand that he needs help, he may get upset. The person's anxiety is understandable when things are going on that he can't make sense of.
• Rechannel
  Look for a way that the behavior can continue in a safe and nondestructive way. The behavior may be important to the person in some way that we cannot understand.
• Reassure
  When a person has been upset, fearful, or angry, take time to reassure him that things are all right and that you still care for him. While the person may not remember the reassurance, he may retain the feeling of having been reassured and cared for. Take time to reassure yourself - you are doing the best you can with a demanding and difficult job.
• Review
  Afterward, think over what happened and how you managed it.
  
  • What can you learn from this experience that will help you next time?
  • What led up to this behavior?
  • How did you respond to it?
  • What did you do right?
  • What might you try next time?

Source: Mace, N. and Rabins, P. 1991. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Tips for Caring for a Person with an Impaired Memory

Courtesy of Geriatric Assessment Program, University Geriatric Center, Omaha, Nebraska.

1. Memory aids, such as clocks, calendars and simply-worded notes, may help the person remain oriented.
2. Much of what you say to the person may soon be forgotten. Be prepared to repeat yourself, sometimes often.
3. Use a calm voice and respond to a question with brief, simple statements. Try using touch and direct eye contact when responding in order to emphasize what you say. Avoid presenting the person with more than one thought at a time, and limit choice options ("Either this or that").
4. Distract the person from an irritating or repetitive topic by using a word from the conversation to change the subject. Try such pleasurable distractions as taking them for a walk or drive, looking through family photos, playing music or giving the person a simple repetitive task to perform, such as folding towels.
5. If distractions fail, try ignoring repeated questions. This may anger or agitate the person, but the questions may stop if they are not reinforced by your behavior. Ignoring may be an especially good idea when you are irritated. It may keep the person from picking up on your angry tone of voice.
6. Most memory-impaired persons function best when they follow a familiar routine in familiar surroundings. Avoid abrupt and frequent changes of routine, location, and social situation. Avoid discussing plans for activities or appointments until just prior to the event so the person does not worry and ask repeated questions days ahead of time.
7. Allow the person to do as much for themselves as they possibly can, even if they are slower and less efficient. Positive reinforcement and praise helps them maintain social and self-care skills. When correcting or directing them, avoid negative commands ("Don't do…"). Use the positive focus ("Let's do…").
8. If the person's memory skills continue to worsen over time, closely monitor their performance of tasks and be prepared to lower your expectations for their performance. Try to take over a task completely only when they cannot perform it even with step-by-step instructions or help. Tasks that involve complex reasoning or present safety problems (such as driving, using appliances or managing financial affairs), may have to be assumed by others sooner rather than later.
9. While you should honestly acknowledge to the person that he/she has a memory problem, confronting the person with their loss of ability may lessen their sense of dignity and self-esteem. Try to remind the person how much they can still do for themselves. Reassure them that they are still loved and valued.
10. To include the person in social conversations, refer to positive memories of the past. Don't discourage reminiscence, as the person is better able to remember past events than they are present ones.
11. Suggest a word or name the person may be searching for in conversation, but avoid correcting mistakes already made. Contradicting or arguing with the person may only cause upset and humiliation.
12. Prevention is the most effective approach to reduce behavior problems. Anticipate and avoid activities and discussions that will provoke anger or agitation.
13. Try to determine a reason for a troublesome behavior. Is the person trying to communicate feelings of fear, pain, hunger or the need to toilet? Respond to the need or emotion you feel the person is trying to express.
14. If the person becomes extremely agitated or verbally or physically threatening, remove him/her from the stressful situation or place. Try to calm the person with slow movements, a soothing and reassuring voice and gentle touch. Do not try to reason with the person, as their ability to understand logic and reason is impaired. If you feel threatened, remove sharp or dangerous objects from the area and stay out of reach. Leave and seek help if necessary.
15. Make note of when a catastrophic reaction occurs. Is there a pattern - such as, time of day, type of activity, specific person -- that can be identified? Simplify the environment by reducing extra people, clutter, noise and activity. Soft music or holding a doll or a stuffed animal may ease agitation and calm fears in a severely impaired person.
16. While use of medication to control behavior should be avoided, medications may be necessary to control depression, hallucinations, paranoia, sleeplessness and extreme agitation. Discuss this with your doctor.
17. Try to discuss openly and honestly the person's memory and behavior problems with family, friends, neighbors and others who will have regular contact with him/her. People tend to respond more appropriately and offer assistance when they understand the situation.
18. Emotional support and respite from caregiving duties are essential to helping you cope. Arrange for someone else to assume your caregiving duties for several hours at a time on a regular basis so you can get out and "recharge your batteries." You can not provide good care for your loved one if you neglect your own needs.
19. Consider joining a self-help or support group. These offer an excellent setting in which to express your feelings and learn creative approaches to solve the challenges you face in providing care. Your local Area Agency on Aging or regional chapter of the Alzheimer's Disease Association can direct you to such groups.
20. Be patient with yourself. Recognize that you will make mistakes and will become angry and impatient at times. Know your own limits and try not to feel guilty when you have to say "no" to others. Remember, you are only human!

(Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.)

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Tips for Sleeping through the Night

Many people with memory loss and confusion are restless at night. Here are some simple things you can do during the day to help the person you're caring for have a quiet night's rest.

1. Eliminate Alcohol and Avoid Caffeine

• Alcohol can increase anxiety. Try serving nonalcoholic drinks in cocktail glasses.
• Offer nonalcoholic beer and wine.
• In addition to coffee, many foods and beverages such as chocolate, black tea, and soft drinks have caffeine.

2. Plan a Regular Activity Program

• Make sure the person gets some exercise or is involved in a daytime activity. For example, many people find a ride in the car enjoyable.
• Take a long walk, preferably in the later afternoon.
  

3. Prevent Daytime Napping

• Keep the person active and awake during the day.
• If naps are necessary, keep them short and earlier in the day.
• Try to get the person up earlier if he or she sleeps late.

4. Help the Person Relax

• Try playing soft music at bedtime.
• Avoid upsetting activities before bedtime.
• If taking a bath or putting on pajamas upsets the person, try doing it earlier in the evening or not at all.
• Give the person a relaxing back rub or leg massage.
  

5. Make the Nighttime Environment

• Make sure the way to the bathroom is softly, but clearly lit.
• Keep the area around the bed clear.
• Block stairs, lock doors and windows, and lock up dangerous items such as scissors or knives.
• If you sleep in a separate area, consider using a room monitor, such as those used for infants, so that you can hear the person.
• Put a commode next to the bed if finding the bathroom is a problem.
• Try gently guiding the person back to bed. He or she may have forgotten that it is time to sleep.

6. Have a Bedtime Routine

• Try to do the same things each night before bed, such as watching TV or listening to music.
• Use the bed only for sleeping, not for other things like reading.

7. Make the Person Comfortable
   

• Adjust the room temperature to make the person comfortable.
• Have extra blankets available.
• Make sure the person's bed, pillow and nightclothes are comfortable.
• With the doctor's approval, treat pain with aspirin or aspirin substitute at bedtime.
• Ask the doctor to evaluate any medications which may cause sleep disturbances, including those that are diuretics.
• Try keeping a diary or log of activities, foods, beverages and medications to help pinpoint the possible cause of sleep trouble.

8. Make Sure the Person Isn't Hungry
   

• Try a light snack, such as crackers or toast, before bedtime.
• If getting up at night to use the bathroom is not a problem, warm milk or herbal tea can be soothing and may help the person feel sleepy.
  

9. Prepare the Person for Sleep
   

• Make sure he or she goes to the bathroom before going to bed.
• Let the person sleep on the couch or in an armchair if he or she refuses to go to bed.
• If changing into pajamas is a problem, let the person sleep in his or her clothes.

10. Create a Familiar Sleeping Area

• A favorite blanket or pillow can help the person feel relaxed.
• Use a nightlight in the room to help the person know where he or she is.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

• Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
• Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Understanding Why Difficult Behaviors Occur: Problem-solving Strategies

There are a number of behavior problems that sometimes accompany Alzheimer's disease and related illnesses. These behaviors may include resistance, wandering, agitation, incontinence, etc. The presence or absence of these behaviors can vary greatly from one person to another throughout the progression of the disease.

There are many reasons why a difficult behavior may be occurring. Sometimes the behavior may be related to changes taking place in the brain. In other instances, there may be events or factors in the environment triggering the behavior. In some situations, a task - such as bathing - may be too complex; or the person may not be feeling physically well.

It can be helpful for caregivers to try to understand why the person with dementia is behaving in a particular way. If caregivers can determine what may be causing or triggering the behavior, it may then be possible to figure out ways to prevent the difficult behavior from occurring again. Listed below are four categories of possible causes of difficult behaviors. It is important for caregivers to systematically look at all of these potential causes, as one or more of them may be contributing to the behavior.

Causes Related to the Person's Physical and Emotional Health

People with dementing illnesses suffer progressive brain damage, which can affect their behavior. This is an important factor to consider when planning interventions for behavior problems.

People with dementia can also have other medical problems that greatly affect behavior. Listed below are some of the more common physical problems to which caregivers should be alert.

1. Effects of medications. People with dementia are very vulnerable to overmedication, to reactions from combinations of drugs, and to their side effects. Drugs can cause confusion as well as sudden changes in a person's level of functioning. Falling, drowsiness, a sudden increase in agitation, strange mouth or hand movements may be side effects of medication and should be reported to the doctor immediately. Tranquilizers and sedatives are sometimes given to facilitate sleep or calm behavior, but these medications can also affect bladder functioning and can cause incontinence problems.
   
2. Impaired vision or hearing. Both of these problems can affect a person's ability to understand what is being said. It is important to see a doctor to correct, if possible, any hearing or vision problems. If caregivers are aware of these deficits, they can often help the person compensate for them.
   
3. Acute illnesses. Urinary tract infection, pneumonia, gastrointestinal infection or fever may lead to increased confusion. It is not always easy to recognize acute illness in people with dementia, since they may not be able to verbalize symptoms. Any sudden changes in behavior should be reported to the doctor.
   
4. Chronic illnesses. Angina, congestive heart failure or diabetes can affect a person's mood and/or level of functioning. Also, chronic pain associated with arthritis, ulcers or headaches can cause irritability.
   
5. Dehydration. Many dementia victims do not get enough fluid, because they no longer recognize the sensation of thirst or they forget to drink. Symptoms of dehydration may include dizziness, confusion, refusal to drink, skin that appears dry, flushing and fever, and rapid pulse.
   
6. Constipation. This can be very uncomfortable and eventually can lead to bowel impaction. In some people with dementia, fecal impaction can contribute to delusional behavior.
   
7. Depression. Many of the symptoms of depression, such as impaired concentration, memory loss, apathy and sleep disturbances resemble those of dementia. It is often very difficult to tell which are caused by depression or by the dementing illness itself or a combination of both of these problems. It is important for your doctor to be aware of your family member's symptoms and do a thorough evaluation for depression.
   
8. Fatigue. Disrupted sleep patterns can cause angry or agitated behavior.
   
9. Physical discomfort. This may be caused by the person's immediate needs not being met. For example, the person may be hungry, the person may need to use the bathroom, or the temperature of the room may be too warm or too cold.
   

Causes Related to the Environment

1. Environment too large. Sometimes the physical space in which the person with dementia is living is just too confusing. Try closing off part of the house. In nursing homes, consider a small separate dining area for people who may need some assistance with eating. Encourage small groups (4-6 people) for social and activity programs rather than trying to include twenty or more impaired people at one time. Some long-term care facilities are designing special dementia care units.
   
2. Too much clutter. Sometimes there is too much in the environment for the person to absorb. Try removing furniture that is no longer being used or other objects that may be in the way. If a person tends to wander, clear a pathway through the house. Whenever possible, simplify the environment so that the confused person is not too overwhelmed.
   
3. Excessive stimulation. When there is too much going on in the environment, such as music during conversation or there are too many people around, some people with dementia may respond with anger or frustration. They may have reached a saturation point and may no longer have the ability to cope with stress. It is important for caregivers to think about what was going on right before the outburst. Was there too much noise? Was the size of the group too big?
   
4. No orientation information or cues. As people become more cognitively impaired, they encounter increasing problems with negotiating the environment. People with dementia become very dependent on the environment to support them. They may get lost trying to find their way to the bathroom because all the doors in the hallway look the same. Some people may be able to read and understand signs, while others may have lost that ability. It may be necessary to provide the information in different ways. For example, some people will be able to follow a sign indicating the direction to the bathroom; some will recognize a brightly colored awning hung over the bathroom door, and still others will need a line on the floor from the dining room to the bathroom.
   
5. Poor sensory environment. As people grow older, their ability to hear, see, feel, taste and smell changes. Usually one or more of these senses are impaired in people with dementing illnesses. Lighting, the use of colors, and visual contrasts between floors and walls can affect a person's behavior and level of functioning. Inadequate levels of light may affect a person's ability to concentrate when he/she is trying to eat. Patterned tile floors can look like steps, causing the person to trip or become uncertain. Glare from direct sunlight or a highly polished floor can affect a person's ability to see.
   
6. Unstructured environment. People with dementing illnesses need a certain amount of routine and daily structure on which they can depend. This consistency is important in helping to minimize the amount of stress the person with memory loss may be experiencing. For example, don't change the furniture arrangements in the house. At the same time, there needs to be flexibility in the daily routine to accommodate the changing moods of the person. For example, a rigid bath schedule can cause problems for both the impaired person and the caregiver.
   
7. Unfamiliar environment. An environment that is new or unfamiliar is more likely to confuse the person with dementia. When planning activities or modifying the physical environment to accommodate the special needs of a person with memory impairment, try to focus on familiar situations with which the person is used to. For some people going to a restaurant or going on a trip may be terribly upsetting. In nursing homes, it is important to create a warm and familiar environment that resembles the person's home, with spaces for a living room, kitchen and family room, etc. The décor should include familiar colors, objects and possessions.
   

Causes Related to the Task

1. Task too complicated. Sometimes we ask people with dementia to do tasks that are too overwhelming and difficult for them, although they may seem simple to us. Getting dressed or brushing teeth are examples of tasks that are very complex because of the many steps involved. Breaking a task down into small, concrete steps is one effective technique that enables a person with dementia to continue to do tasks successfully.
   
2. Too many steps combined. Make sure the person is doing one small step at a time. Sometimes caregivers combine several steps together not realizing the impaired person may no longer be able to do two or three steps at one time.
   
3. Task not modified for increasing impairments. As the person's functioning declines, the caregiver may have to do the first few steps of the task to get the person started. Eventually the caregiver may have to do most of the steps him/herself; even then it is important to try to keep the person involved, doing one or two simple steps.
   
4. Task unfamiliar. People with dementia gradually lose their ability to learn new tasks or skills. Try to focus on familiar tasks the person may have done before the onset of the illness, such as washing and drying dishes, making beds, folding laundry, gardening, etc.

Causes Related to Communication

Communication between the caregiver and the person with dementia is an extremely important - and often difficult - part of the caregiving process. Many times people with dementia become angry or agitated because they do not understand what is expected of them; or they may be frustrated with their inability to make themselves understood.

Some of the causes of poor communication and some suggestions for better communication are discussed in Section 2- "The Importance of Good Communication Skills."

Problem-solving

When you are faced with a difficult behavior or situation, try to understand why this behavior is occurring. What are some of the factors triggering the behavior? Can they be changed? It is important to try to recognize elements in the environment, the medical situation, or problems of communication that may be contributing to the problem.

1. When does the problem occur? It can be helpful to keep a daily log or a record describing the problem or situation. Jot down the time and what happened. In as much detail as possible, think abut what was going on right before the behavior occurred. Who was involved? Who was affected by the behavior? What emotion did the confused person express? Anger? Frustration? Fear? How did the caregiver respond? Did the caregiver's approach work? This log can be helpful in identifying a pattern in terms of the time of day or some triggering event. Angry outbursts, for example, may occur at certain times during the day when the person is fatigued, or when there are too many people in the room.
   
2. Carefully review. Think of the four categories above, and try to pinpoint specific causes. Is the problem related to the person's health? To the environment? To the task in which the person may be engaged? To the style of communication between the caregiver and the person?
   
3. Be creative. Develop a list of alternative strategies for responding to the behavior or situation. Have someone else look at the situation and give you suggestions. Refer to this manual for additional ideas.
   
4. Think about the strategies you have identified. Decide on the one you will try first. Don't worry if it fails. You are gaining new information about the situation even if the approach doesn't work.
   
5. Be flexible. Problem solving is a process of trial and error. There are no simple solutions. You may no sooner solve one problem than another develops. You may even find that your solution works sometimes, but not others.
   
6. Reassure the person after an upsetting situation. Let him/her know that you understand and care.
   
7. Remember: an organic brain disease causes the behavior. The person is not deliberately trying to be nasty, stubborn, or annoying.
   
8. Don't try to carry the entire burden yourself. It is okay to ask for help.
   
   

References

Source: Robinson, A., Spencer, B., and White, L. "Understanding Difficult Behaviors". (1989). Ypsilanti, Michigan: Eastern Michigan University.

Weaverdyck, S. (1989). Neuropsychological assessment as a basis for intervention in dementia.

"Dementia Care: Patient, Family and Community." Baltimore: The Johns Hopkins University Press. (The conceptualization of the above assessment process is from the work of this author.)

Zarit, S., Orr, N., Zarit, J. (1985). "The Hidden Victims of AD: Families under Stress." New York: New York University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Is Your Medication Helping or Hurting?

Adapted from adVANCES, the quarterly publication of the Alzheimer's Association of Chicago, Illinois.

It is often assumed that a drug prescribed by a physician is automatically safe. But when medications aren't properly used, serious, even fatal drug interactions can occur.

Individuals over age 65 are at the highest risk for dangerous drug interactions, since they consume 25 percent of prescription and non-prescription drugs. In addition, most have more than one physician or specialist administering care. "Danger occurs when a person is taking more than one prescription drug and is being treated by more than one physician," according to Raymond Woosley, chairman of pharmacology at Georgetown University.

As a person ages, the amount of water in the body decreases, making it difficult to dissolve various medications. Because the medications can't be diluted, their high concentrations can cause severe reactions or stay in the body longer.

People with Alzheimer's disease may be even more at risk, because they may not be able to communicate how a medication is making them feel. Caregivers may also have difficulty distinguishing between a drug reaction and the behavioral symptoms associated with the disease, such as disorientation, hallucinations, and confusion.

"Your physician should review all the medications you are taking at least annually," says Robert Carroll, MD, member of the Alzheimer's Association national board of directors. "This includes prescription and over-the-counter drugs and herbal remedies."

When two drugs are taken together, the effects can be magnified, or in some cases, the drugs cancel each other out. This happens often with even the most common medications. "Antihistamines, pain killers, and ulcer medications all target the central nervous system and can cause excess sleepiness, drowsiness, and confusion when mixed," says Carroll. "These symptoms can often be misinterpreted as worsening dementia."

It is important to be proactive about learning the potential bad interactions that can occur from the drugs you are taking. The best way to protect yourself is to communicate with your physician. Discuss the medications you are taking and any current problems you are experiencing or being treated for by another specialist.

To protect yourself from an adverse reaction:

• Keep a list of all drugs you take and regularly discuss them with your physician.
  
• Select a pharmacist who provides comprehensive services. Have all your prescriptions filled there.
  
• Learn about the purpose, actions and side effects of all prescribed drugs.
  
• Learn how to take the drugs, what time of day to take them, and whether they can be taken at the same time as other drugs.
  
• Review the use of over-the-counter drugs with the pharmacist.
  
• Follow the recommended instructions for taking drugs.
  
• Report to your doctor or pharmacist any symptoms that might be related to the use of a drug.

"Protecting a person from adverse drug reactions is a team effort between the patient, caregiver, physician and pharmacist," concludes Carroll.

(From Merck Manual of Medical Information, 1997)

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Drug Research

To learn more about Alzheimer's disease and to find effective treatments, researchers need caregivers and patients who are willing to participate in research studies and projects. The message is simple: Research is critical in finding ways to prevent, treat, and cure Alzheimer's disease.

There are many different types of research studies. Some projects focus on psychological aspects, caregiver research, or autopsy findings. The information in this paper focuses on drug research. Additional fact sheets will present highlights about other kinds of research.

Many caregivers believe that participation in research projects and studies offers an opportunity to contribute to the future well-being and health of other patients and caregivers, and to fight back against Alzheimer's disease. You can make the most of your participation in a research study or project by following these guidelines:

Understand your motivations.

Review your reasons for participating in the research project. Do you sincerely want to help researchers find a treatment or cure for the disease? Or are you hoping that the patient will improve dramatically by participating in the study? Try not to have unrealistic expectations that the patient will improve greatly or that a cure to the disease will be found while you are participating in the study.

Examine the possibilities.

Many clinical drug trials use two groups for testing. One group receives the drug, and the other receives a placebo, or non-medicated "sugar pill." The participants are not told whether the pill is the active drug or the placebo. It is important to understand this procedure.

Balance risks and benefits.

In a research study, one cannot be sure before doing the study whether or not the drug will be beneficial. Studies in animals are performed before clinical trials to minimize the risk for human subjects. Some patients may show improvements while others will see little or no improvement. In fact, it's possible that some drugs may cause the person's condition to worsen. Careful monitoring is conducted during a drug study to minimize patient harm.

Action Steps

Ask questions.

Before making a decision to get involved in a research study, make sure you get satisfactory answers to the following questions:

• Purpose of Research
  • What is the purpose of this study? Why is it being done? What do the researchers hope to find?
  • How will the study be conducted? Who will participate? Where will it be conducted? Over what span of time will the study be conducted? Keep in mind that some studies continue for as long as five years.
    
• Drugs, Dosage and Effect
  • What kind of drug might the patient be given? How large is the dosage and what are the risks involved in taking this dosage?
  • How will the drug be given? How will you be involved as a caregiver? What are the other responsibilities that the family might be asked to assume? For example, will you be asked to keep a daily diary? And how often will you be expected to bring the patient to the research site? Who will be your contact person?
  • What are the potential side effects of the drug? How might the patient's behavior change as a result of taking the drug? To what extent could the patient's condition become worse?
• Requirements
  • What kind of consent form will the patient be asked to sign? Keep in mind that a family member may be asked to sign for the patient. If you have questions or do not understand the form, you might want to talk with the researcher. Don't hesitate to discuss your questions with the patient's personal physician.
    
• Costs
  • What is the cost of participating in the study - both in time and money? To what extent will travel, lodging, and meal expenses be covered by the research project? How will expenses be reimbursed?
    
• Researchers
  • What are the credentials of the researchers? Have they conducted similar studies?
  • Do you feel that the researchers are people you can work with easily? Do they answer your questions and give the information you request?
    
• Information and Follow-up
  • What kind of reports or information will you receive about the completed research? Will there be follow-up procedures required.

Directions in Research for Alzheimer Treatments

Throughout the United States and worldwide, dozens of medications for those suffering with Alzheimer's disease are being tested in clinical trials. Current drug treatments focus on producing temporary improvements in cognitive impairment. Long term strategies being developed now will attempt to slow the progression of the disease.

The Food and Drug Administration (FDA), in conjunction with the Alzheimer's Association and other professional groups is working to ensure the development of drugs that are effective and safe for the person with Alzheimer's disease. The FDA has appropriately high standards for judging whether the benefits of a medicine likely outweigh its possible risks.

The process involved in drug development, from first identifying the medication in the laboratory to the end stage of introduction into the marketplace, is a slow and expensive procedure. Costs have been estimated between $115 to $150 million to move a drug from the pre-clinical phase to availability to the public. The research funding efforts of the Alzheimer's Association have contributed to the process of developing new drugs.

Human Testing (Clinical Trials)

There are three phases of human testing, each involving larger numbers of people than the one before.

Phase I: These tests involve about 30 normal, usually healthy volunteers to determine the drug's safety profile in the body. Aspects of the drug's action are also studied (How is the drug absorbed? How does it pass through the body? What is the effect of the drug, and how long does it last? What is a safe dosage range?). This process takes about one year.

Phase II: This phase consists of controlled studies in approximately 100 to 300 volunteer patients (people with the disease) to assess the drug's effectiveness. Simultaneous animal and human studies continue to determine if the medicine is safe. This period of clinical testing takes about two years.

Phase III: Here the testing moves to larger numbers of volunteer patients, usually 1,000 to 3,000 in clinics and hospitals. Physicians give the medicine, and patients are monitored to determine the effect of medication on the disease and to identify adverse reactions. Phase III clinical studies last about three years.

New Drug Application (NDA): Following the successful completion of all three phases of clinical trials, the company sponsor must file an application. The report must contain all the scientific information that the sponsor has gathered. The average review of the application by the FDA (Food and Drug Administration) takes two to three years.

Approval: Once the NDA (new drug application) is approved, the medicine becomes available for your doctor to prescribe. The company must continue to submit periodic reports to the FDA, including any cases of adverse reactions, and appropriate quality control records. For some medicines, the FDA requires additional studies to evaluate long-term effects.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter Whitehouse, MD, Ph.D., University Hospitals of Cleveland, Alzheimer Center, Cleveland, Ohio.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Other Resources include:

• Alzheimer's Association and Pharmaceutical Manufacturers Association. "Alzheimer's Medicines in Development." Washington, D.C., November, 1989.
• George J. Ana. (1989). "The Rights of Patients: The Basic ACLU Guide to Patient Rights." Carbondale, Illinois: Southern Illinois University Press.
• Nancy L. Mace and Peter V. Rabins, MD. (1991). "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Just the Facts and More: Medication

As a caregiver you need to understand the use of medications, and be alert to possible over-medication and to adverse reactions to drug combinations. No medications prevent or cure Alzheimer's disease, but physicians rely on several drugs to manage delusions and hallucinations, depression, agitation, or sleeplessness.

Although these medications may affect specific disease symptoms and assist in managing them, they can also produce side effects such as agitation, dry mouth, drowsiness, problems in walking, tremors, falling, or constipation.

Even though a physician might prescribe a drug for a limited period of time, it can sometimes take up to four weeks for a drug to leave the patient's system after use is discontinued.

Some medications can contribute to the Alzheimer patient's problems and make some symptoms even worse. For example, a person who begins taking drugs for high blood pressure or a heart problem might appear to be more confused than before he began taking the drugs.

So called anti-cholinergic drugs can also block the production of a chemical within the brain called acetylcholine and further alter the patient's memory.

To understand the effects of medications and how to manage their use, consider the following tips:

Action Steps

Get medical advice.

Be cautious about giving any medication - whether it's an over-the-counter or prescription variety.

• Begin by asking your physician to review all medications, in order to check for any possible interactions between drugs.
  
• Make sure that every physician involved in the person's care knows about all prescribed medications.
  
• Find out as much as possible about every medication, including its name, purpose, dosage, frequency, and possible side effects. If serious side effects occur, report them immediately to your physician.
  

Be prudent.

Under no circumstances should you change dosages without first consulting your physician. In addition, avoid the temptation to exaggerate or over-report symptoms in order to persuade your physician to prescribe a new drug or to increase the patient's dosage. Do not share medications with other caregivers or keep medication bottles from old prescriptions.

Rely on your pharmacist for information.

Pharmacists can be another information source. Your local pharmacist can also check for interactions between drugs. Keep in mind that pharmacists can neither prescribe drugs nor alter drug dosages.

Maintain accurate and ongoing records.

Keep a written record of all current medications, including the name of the medication, dosage, and starting date. Carry a copy of this list with you in your wallet or purse at all times. This record will be invaluable in the event of a serious drug interaction or overdose.

Be candid and direct.

In clear, simple language help the individual understand the kinds of medications he is taking and why. In addition, offer clear instructions such as these: "Here's the pill for your high blood pressure. Put it in your mouth and drink some water."

Develop a routine for giving the medication.

Giving medications in a specific way at specific times of the day or evening will help to reduce conflicts. However, if the person refuses to take the medication, stop and try again at a later time.

• NEVER assume the individual will take medications on his own. It may be necessary to check to see whether the medicine has been swallowed. At some point in the progression of the disease, you will need to assume responsibility for giving medications.

Stay organized.

Separating pills into a plastic container with small compartments labeled "day" and "evening" or "Monday," "Tuesday," "Wednesday," etc. will help in tracking medications.

• Other caregivers find it useful to give medications in individual cups or envelopes, or to keep a calendar and check off each dose as it's taken.

Adapt to the person.

If the person has problems swallowing pills or spits out the pills, you might try crushing the pills and mixing them with applesauce or cottage cheese. Some medications might also be available in liquid form.

Take safety precautions.

Put a lock on the medicine cabinet or place the medications in a locked drawer. If the person spits out pills, make sure these pills aren't picked up and eaten by children or pets.

Avoid leaving the person alone with medication bottles in the room. Be sure to throw out all old medicines.

Be prepared for emergencies.

Research the names and telephone numbers of pharmacies or taxi services that deliver medications. Also find out the names of pharmacies that are open on Sundays and weekends.

• Keep the number of your local poison control center or emergency room handy.
  
• If you suspect a medication overdose, call the number before inducing vomiting or taking any other action.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter Whitehouse, MD, Ph.D., University Hospitals of Cleveland, Alzheimer Center, Cleveland, Ohio.

Special thanks to the following Chapters of the Alzheimer's Association: Eastern Massachusetts and South Central Michigan.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Other Resources include:

• David L. Carroll. "When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide." New York: Harper and Row, 1989.
  
• Howard Gruetzner. "Alzheimer's: A Caregiver's Guide and Sourcebook." New York: John Wiley and Sons, 1988.
  
• Nancy L. Mace and Peter V. Rabins, MD. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved

Caregiving Guidelines for the Person with Alzheimer's Disease

Caregiving Guidelines for the Person with Alzheimer's Disease (AD)

1. An accepting attitude of the person with AD (Alzheimer's Disease) plus information, education, and an understanding of the disease all help to eliminate the stress of the care provider or staff.
   
2. Be sure to know the personal history of every person with AD in the unit, since each one is carrying his/her life around with them - right there inside.
   
3. Persons with AD still have instincts and feelings just as any other human being, and they will pick up on negativity even when we think we are concealing it. (Think of babies and children.)
   
4. Like other human beings, persons with AD respond to their emotional and physical environment. The feelings we emit often return to us. It is always best not to take the patient's actions personally.
   
5. Use validation therapy with persons with AD. You cannot reason with dementia.
   
6. Eliminate behavioral problems before they happen by structuring the environment therapeutically so that it works with rather than confuses the person with AD. (Creativity may be the answer in an old building and little funds.)
   
7. Remember the person with AD still has reflexes, and their reflexes can often be triggered into action for self-help if we give the person the right cue.
   
8. Since most communication is nonverbal, it is possible to communicate with the person even after she/he ceases to speak. Remember, we communicate with babies.
   
9. For persons who still walk, exercise is as necessary for them as it is for the care provider. They need a safe, long or circular place to walk and wander. Some persons in wheelchairs can also exercise.
   
10. Distraction and validation therapy can often be used instead of force and/or drugs.
    
11. Problem behavior can often be prevented by eliminating too much stimulation from the person's environment. The amount of stimulation should be determined by the person's stage in the disease.
    
12. Make toilets as visible as possible. Take persons to toilet, if necessary, on a regular schedule to avoid incontinence. They still have an internal clock.
    
13. Cleanliness of the intimate body parts is essential in the care of the person with AD.
    
14. Use humor often as a stress releaser. Persons with AD still have a sense of humor.
    
15. The care provider or staff can reduce stress for everyone while providing a quality of life by:
    
    • Accepting persons with AD as fellow human beings;
    • Creating programs that provide an opportunity for the person to succeed; and
    • Designing a therapeutic environment that works for persons with AD.
      
16. There is always a solution to every problem.

 

Source: Lela Knox Shanks, 1994

Just the Facts and More: Bathing

Keeping the Alzheimer patient clean and well-groomed can be a challenge for the caregiver. A depressed person might have lost her desire to bathe while another person might feel embarrassed about getting undressed or might become frightened by running water or mirrors.

For the person who has Alzheimer's, it is easy to feel confused and overwhelmed by simple daily routines such as bathing and grooming. If the person seems afraid, stressed or resistant to bathing, try to determine the reasons why by asking the following questions:

Physical/Psychological Factors

• Does the person seem depressed?
• Is there a physical illness or infection?
• Does the person seem overly sensitive to water or changes in water temperature?
  

Environmental Factors

• Is the person sensitive about having someone else in the bathroom?
• Is the person able to find the bathroom and see clearly once (s)he enters it?
• Is the room temperature too cold?
• Is the water temperature too hot or cold?
• Is the water pressure from the shower too intense?
• Is the water in the tub too deep?
  

Special Concerns

• Is the person afraid of falling, running water, or soap?
• Is the person confused over such tasks as turning on the water or filling the tub?

Once you have determined the answers to these questions, you will be in a better position to manage the bathing routine.

Action Steps

Have reasonable exceptions.

Keep in mind that frequency of washing and bathing is a personal preference. Some people may not feel the need to shower and/or wash their hair every day. In these cases you might want to alternate a sponge bath with a more complete bath or shower.

Adapt to the patient's needs, routines, and preferences.

If the person is used to taking a shower in the morning or a bath at night, try to maintain that routine. Changing from day to night might distress the person. Also keep in mind that a person may refuse to take a bath for an unfamiliar caregiver of the opposite sex.

Prepare the bathroom in advance.

• Have the towels ready.
• Draw the water in the bathtub and test the temperature.
• Pre-measure the shampoo.
• Develop a soap pocket in the washcloth so that the person can wash him/herself.
• Keep the bathroom warm and comfortable.

Gently prepare the patient for the bath.

Be directive at bath time by using such phrases as, "Your bath is ready." In this way, the person will focus on each step of the task instead of whether or not (s)he needs or wants a bath. If the individual continues to resist the idea of bathing, distract him/her for a few moments and then try again.

Make the bathroom safe.

• Always check the temperature of the water. Keep in mind that the person may not be able to judge the temperature.
• Avoid using bubble bath or bath and shower oils that would make the tub or shower stall slippery.
• Keep in mind that showers are often more dangerous and frightening to people with Alzheimer's disease than baths. If you must use a shower, install grab bars and use a tub seat.
• Never leave a person alone in the bath or shower.
• Consider using a handheld shower.
• Use only two to three inches of water in the tub and make sure there are rubber mats or decals on the tub's bottom.
• Use a non-slip mat and make sure that the bathroom floor is free from puddles. Some caregivers install carpeting in the bathroom.

Take care in giving the bath.

• Gently coach the person during each step of the bath, reminding him/her of the areas that need washing. Keep in mind that you may need to complete part of the bath or shower yourself.
• Plan to do a project such as hair washing in the morning when the person is well rested. Get the individual to participate as much as possible.
• Avoid using harsh deodorant soaps unless there is a serious problem with incontinence, in which case there are special soaps available.
• Make sure the person washes the genital area -- especially if incontinence is a problem. Also make sure the person washes within folds of flesh and under the breasts.
• After the bath or shower is completed, check to see that the person is completely dry.
• Check the person for red areas of skin, rashes and sores. If the problem is serious, consult a physician. Keep in mind that pressure sores and skin ulcers can develop quickly on people who sit or lie down much of the time.
• Use a body powder, cornstarch, or baby powder under the breasts or in creases or folds of the skin and use a lotion to keep skin soft and flexible. If the individual resists deodorant, try baking soda.
  
  

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RNC, Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Orange County, California; Eastern Massachusetts; East Central Michigan; Greater Kansas City, Missouri; South Central Michigan; and Cleveland, Ohio.

Other Resources include:

• Miriam Aronson, Ed.D. "Understanding Alzheimer's Disease." New York: Scribner's, 1988.
• Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., M.D. "The Loss of Self." New York: Norton and Company, 1986.
• Nancy L. Mace and Peter V. Rabins, M.D. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press, 1991.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Dental Care

The person with Alzheimer's disease may have special problems maintaining good oral hygiene. For example, (s)he may have difficulty brushing because (s)he forgets what to do with the toothpaste or how to rinse. As the disease progresses, the person may forget that dental care is important and neglect caring for his/her teeth and gums.

You, the caregiver, may need to assume increasing responsibility for your family member's dental care. Your efforts early in the course of the disease may help the person to avoid extensive dental procedures later, when (s)he may have trouble tolerating them. In addition, good oral hygiene can help to maintain the person's integrity, appearance and comfort despite the progression of Alzheimer's disease.

Action Steps

Take preventive measures.

• Recognize the relationship between diet and good dental health. You may want to eliminate or limit sugary foods such as candy, cookies, cakes and soft drinks. If the impaired person has a "sweet tooth," you should hide sugary foods in a cupboard, refrigerator or freezer. You may also want to consider foods with artificial sweeteners.
  
• Be aware of the dangers of some between-meal snacks. Try to encourage the person to eat fruits and raw vegetables rather than sugary snacks. But if you must give him/her sugary foods, make them a part of regular meals. After the meal, encourage the person to brush his/her teeth or at least rinse his/her mouth with water.
  
• To protect tooth surfaces from decay, encourage the patient to use a fluoride rinse or gel as well as a fluoride toothpaste. Fluoride rinses can be purchased over the counter, but you need a prescription to purchase a stannous fluoride gel. If the person has difficulty spitting, you may have to wipe the gel from his/her mouth or allow him/her to swallow it. Consult your dentist about using stannous fluoride gel.
  
• Help the person brush his/her teeth at least twice a day for two minutes, if possible, with the last brushing after the evening meal and night time liquid medication. Allow plenty of time and find a comfortable position if you must do the brushing yourself. Gently place the toothbrush in the person's mouth at a 45-degree angle so you massage gum tissue as you clean the teeth. Also, you may want to use a spoon or another brush to pull the cheek sideways so you can see the area being brushed.
  
• Try to use dental floss. Most dentists recommend dental floss, although you and the person with Alzheimer's may find it frustrating to use. As an alternative, some caregivers use a "proxabrush" to clean between the teeth.

Find a dentist you can trust.

• Seek dental care for the person shortly after (s)he is diagnosed with Alzheimer's disease. Try to work with the dentist throughout the progression of the disease.
  
• Contact your local dental society to find the names of professionals who are qualified to work with elderly patients. Some general dentists are familiar with the illnesses and conditions of older people and have often spent extensive time working in nursing homes.
  
• Emphasize prevention. Instead of having the patient visit the dentist twice a year, you may want to schedule visits more frequently for regular cleanings. It is important to prevent tooth decay and gum problems in order to prevent pain and infection.
  
• Stress maintenance. By working with a dentist to treat the person's dental problems early in the disease, you can help to avoid having to do extensive dental work as the disease progresses.
  
• Be sure to provide the dentist with a complete listing of all health care providers who have served this family member, his/her complete medical history, and the names of all medications (s)he has received. You may ask the dentist to arrange for the transfer of records from other offices to his/her office.

• Be aware of potential medication problems. Among the medications you should discuss with your dentist are Haldol, which may cause "dry mouth." Other medications you should discuss include blood thinner, antidepressants, anti-anxiety agents, antihistamines, diuretics, and hypertensives.
  
• Be aware of the special problems of dry mouth. Saliva tends to act as a buffer against tooth decay. Some medications reduce the production of saliva, leading to an increase in tooth decay and gum problems. If the person complains of dry mouth, offer him/her water periodically throughout the day, or buy artificial saliva (available at your pharmacy). Since alcohol can contribute to a dry mouth, some experts suggest using mouth rinses that are low in alcohol, or diluting mouth rinses containing alcohol.
  

Use patience and common sense.

• Explain dental care to your family member. Don't expect the person to remember how to brush and floss. Instead, encourage him/her to brush by saying, "Show me how you brush your teeth." You may need to guide the person through each step of the process by placing your hand over his/hers, or demonstrate by brushing your own teeth at the same time. If the person seems agitated or uncooperative, you may want to postpone brushing until later in the day, or brush fewer times a day.
  
• Experiment with different types of toothbrushes or dental devices. Many caregivers believe that a soft-bristled children's toothbrush works better than a hard-bristled adult's brush. Other caregivers prefer a long-handled or angled brush. Be aware that electric appliances may confuse, disturb or be a safety concern for the person with Alzheimer's.
  
• Make it easy to use dental devices. Many caregivers find that it is easier for the person to grasp a toothbrush if a ball or bicycle handlebar grip is attached to the end of the handle. Another idea -- wrap aluminum foil around the toothbrush handle or attach a Velcro strap around the person's hand.
  
• Be aware that, as the disease progresses, the person with Alzheimer's may refuse to clean his/her teeth or may become uncooperative in the dental office. At this point, you may need to assume complete responsibility for the patient's dental hygiene.

Take special care of dentures.

• If the person wears dentures, ask your dentist to verify that they fit properly. Poorly fitting dentures make it difficult for him/her to eat and digest food, and may contribute to a poor appetite or lack of interest in certain foods.
  
• Rinse partial and full dentures with plain water after meal times to remove food particles. Use a hard-bristle brush, such as a manicure or fingernail brush to clean the dentures. Be sure you remove the dentures and soak in a cleanser or mouthwash overnight and then help the person reinsert the dentures in the morning.
  
• If the person is in a group or nursing home environment, you may want to ask your dentist to have the dentures labeled with his/her name.
  
• Keep in mind that in the later stages of this disease, the person may not be able to wear full or partial dentures. Speak regularly with the dentist about the patient's changing needs.
  

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet were Barry W. Ceridan, DDS, PSC, a general dentist in private practice in Louisville, Kentucky and President, American Society for Geriatric Dentistry; and Marilyn R. Carlson, DMD, MD, President, Ohio Chapter, American Society for Geriatric Dentistrys.

Special thanks to the following Chapters of the Alzheimer's Association: Cape Cod and the Islands, Massachusetts; Eastern Massachusetts; Honolulu, Hawaii; Louisville, Kentucky; Northern Virginia; St. Louis, Missouri; and Western Massachusetts.

Recognition is also extended to the American Society for Geriatric Dentistry.

For more information on how to find a dental professional who treats special care patients, contact your local or state dental society.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Dressing

Physical appearance is important to everyone's sense of self-esteem. For the person with Alzheimer's disease, the simple act of putting on clothing can be frustrating. For this reason, you need to manage dressing difficulties one-by-one. There are many reasons why the person with Alzheimer's might have problems dressing, including the following:

Physical Problems

• Does the person have problems with balance or with motor skills that are needed to fasten buttons or close zippers?

Intellectual Problems

• Does the person remember how to dress?

• Does (s)he recognize her clothes?

• Is (s)he aware of the time of day or season of the year?

Environment

• Is the person troubled by lack of privacy, a cold room, poor lighting, or loud noises?

Other Concerns

• Are you pressuring the person to get dressed quickly?

• Are you giving the person clear step-by-step instructions on how to dress or does the task seem too complicated?

• Is the person embarrassed or humiliated by dressing in front of a non-family caregiver?

• Once you've answered these questions, you will be in a better position to help the person get dressed.
  
  

Action Steps

Recognize the importance of clothing and self-esteem.

• Keep in mind that getting dressed and looking presentable are critical to a person's sense of well-being and self-esteem.
  

Make it easy for the patient to make clothing selections.

• Lay out proper clothes for the person, including appropriate selections for warm and cool weather.
  
• If appropriate, give the person an opportunity to select favorite outfits or colors.
  
• If the person insists on wearing the same clothes every day, try to launder these clothes often or get duplicates of favorite outfits. You may need to temporarily distract the individual as you remove clothing for cleaning.
  
• You may want to remove excess clothing from the closet. Seeing many clothes can be overwhelming and upsetting to the person.
  

Choose clothing that's practical.

• Select fabrics that are lightweight and flexible and feel soft and comfortable on the person's skin.
  
• In general, choose clothing that's durable, washable and flame retardant.
  

Consider experimenting with various types of fasteners.

• Keep in mind that pressure tape or Velcro can be used as a substitute for buttons, snaps and hooks.
  
• Other devices include large-ring or loop-handled zippers or tape loops.
  
• Many caregivers turn to jogging suits that are washable, comfortable and have few fasteners.
  

Pay attention to the feet.

• To give the person's feet adequate support, encourage wearing regular shoes instead of slippers.

• Slip-on styles with elasticized inserts on the top are easy to put on and remove.
  
• Sneakers or shoes with crepe soles can help to prevent falls. Have an extra pair of shoes on hand in case the person's feet swell and keep the feet warm with loose-fitting, ease-to-wear socks.
  

Prepare for dressing.

• Give easy-to-understand instructions and simple clothing selections so the person can dress him/herself for as long as possible.
  
• Lay out clothes in the order the person will put them on and then assist him/her through each step of the dressing process.
  

Dress for ease and convenience.

• Choose comfortable and loose-fitting clothing that is easy to put on and remove.
  
• Many caregivers find that cardigans or tops that fasten in front are more comfortable and easier to work with than pullovers.
  
• To avoid tripping and falling, make sure that clothing length is appropriate.
  

Adapt regular clothes to the needs of the patient.

• If the patient is confined to a wheelchair, you might adapt regular clothes to protect the patient's privacy and allow for greater comfort.
  
• Make sure that clothing is loose-fitting, especially at the waist and hips.
  
• Choose fabrics that are soft, stretchable and slick.
  

Adjust to the problems of incontinence.

• If incontinence is a problem for the person, make sure that clothing is easy to remove and care for.
  
• Although some caregivers purchase protective pads, you might also want to add an extra layer of protection to regular clothing by lining the backs of skirts or pants with terry cloth material.

Helping the Alzheimer patient with his/her grooming and dressing will allow him/her to maintain a sense of dignity and positive self-esteem. It's important to remember to let the person perform daily dressing routines for as long as possible.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RNC, Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Eastern Massachusetts; South Central Michigan; St. Louis, Missouri; Southwestern Missouri; and Cleveland, Ohio.


Other Resources include:

• Miriam K. Aronson, Ed.D. "Understanding Alzheimer's Disease." New York: Scribner's, 1988.

• David L. Carroll. "When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide." New York: Harper and Row, 1989.

• Donna Cohen, Ph.D., and Carol Eisdorfer, Ph.D., MD. "The Loss of Self." New York: Norton and Co., 1986.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Holidays

For most families, holidays are filled with opportunities for togetherness, sharing, laughter, and memories. But holidays can also be filled with stress, disappointment, and sadness.

Because of the changes (s)he has experienced, the person with Alzheimer's may feel a special sense of loss and time passing during holiday seasons. At the same time, caregivers may feel overwhelmed in their effort to maintain holiday traditions on top of caring for the person with this disease. In addition, caregivers may feel hesitant to invite other family and friends over to share the holiday for fear they will react negatively to the changed behavior of the family member.

If you are feeling guilty, angry, frustrated, or trapped before, during or after holiday celebrations, it may help to know that these feelings are normal and that you are not alone. Here are some suggestions that may help to ease the burden of caregiving and make holidays happy, memorable occasions.

Action Steps

Adjust expectations.

• Discuss holiday celebrations with relatives and close friends. Call a face-to-face meeting or arrange for a long-distance telephone conference call to discuss major holiday celebrations. Make sure that family members understand the situation and have realistic expectations. By discussing past celebrations, you may be able to agree on how you will handle upcoming holidays.
  
• Give yourself permission to do only what you can reasonably manage. No one can expect you to maintain every holiday tradition or event. If you have always invited 15-20 people to your home, consider inviting five for a simple meal. Also consider asking others to bring dishes for a "potluck" meal or to host the meal at their home.
  
• You may wish to familiarize others with the situation by composing a letter that makes the following points. Here is an example:
  
  "I'm writing this letter to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
  
  "You may notice that _____ has changed since you last saw him/her. Among the changes you may notice are _____ . I've enclosed a picture so you know how _____ looks now.
  
  "Because _____ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable. Please understand that _____ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do I. Please treat _____ as you would any person. A warm smile and a gentle touch on _____'s shoulder or hand will be appreciated more than you can know.
  
  "I would ask that you call before you come to visit or when you're nearby so we can prepare for your arrival. Caregiving is a tough job and I'm doing the very best I can. With your help and support, we can create a holiday memory that we'll treasure."

Involve the person with Alzheimer's disease.

• Throughout all stages of preparation, involve the AD person in safe, manageable activities. This can help to prepare the person for the holiday and give you an opportunity to spend quality time together. You may want to begin slowly by asking the person to help you prepare food, wrap packages, hang decorations, or set the table. (Avoid using candies, artificial fruits/vegetables, or other edibles as decorations. Blinking lights may confuse the person.)
  
• Maintain the person's normal routine so that holiday preparations don't become disruptive or confusing. Remember: Taking on too many tasks at one time can wear on you and the impaired person. Try to blend seasonal rituals into the daily activities that you both depend upon, such as taking a relaxing walk.
  
• Build on past traditions and memories. Your family member may find comfort in singing old holiday songs, for example. But also experiment with new holiday traditions, such as renting seasonal videos that the less active person may enjoy.
  

Adapt gift-giving.

• Encourage useful gifts. Among the practical, useful gifts for people with this illness are identification bracelets, comfortable, easy-to-remove clothing, audio tapes of favorite music, videos of family members, photo albums, subscriptions to magazines or cable television or gift certificates for long distance telephone service.
  
• Warn people about difficult or unsafe gifts. Advise people not to bring dangerous tools or instruments, utensils, challenging board games, complicated electronic equipment or pets.
  
• Allow the person to join in gift-giving. For example, someone who once enjoyed cooking may enjoy baking cookies and packing them in tins or boxes. You may also want to buy the gift and allow the person to wrap it.
  
• Don't neglect your own needs. If friends or family members ask what you want for a gift, suggest a gift certificate to a carryout restaurant, laundry or dry cleaner, or cleaning service. If you don't receive these gifts, celebrate the holiday by giving such a gift to yourself.
  
• Ask for help and support. Develop a bulletin board for listing tasks and responsibilities. If someone ever asks, "What can I do to help?" you can respond with a specific idea.
  

Try to be flexible.

• Consider celebrating over a lunch or brunch, rather than an evening meal, to work around the evening confusion or sundowning that sometimes affects some people with Alzheimer's. Also consider serving nonalcoholic drinks and keeping the room bright.
  
• Prepare to deal with your post-holiday letdown. You may want to arrange for in-home care so you can enjoy a movie or lunch with a friend and reduce post-holiday stress.
  
• Remember that holidays are opportunities to share time with the people you love. Try to make these celebrations easy on yourself and the person with Alzheimer's disease so that you may concentrate on enjoying your time together.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Judy Wunsch, Volunteer Coordinator, Los Angeles Chapter of the Alzheimer's Association.

This fact sheet was also based in part on "Home for the Holidays," a pamphlet developed by the Alzheimer's Association of California Council.

Special thanks to the following Chapters of the Alzheimer's Association: Virginia, St. Louis, Detroit, Cleveland, Portland, San Francisco, Lincoln, Des Moines, Honolulu, Denver, Louisville, Chicago, Western North Carolina and Orange County. Special thanks to the Duke Alzheimer's Family Support Program, Duke University, Chapel Hill, North Carolina.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Hospitalization

Spending time in a hospital can be a confusing, uncomfortable, anxiety-filled experience for anyone. But for the person with Alzheimer's disease, who may easily become confused or disoriented, the experience of going to the hospital and having to stay overnight can be traumatic.

Moving a person with Alzheimer's from the quiet, familiar setting of home to the somewhat cold, unfamiliar world of a hospital or clinic may emphasize memory loss and difficult behavior. Add to that the stress of the illness, the prospect of surgery, the effect of anesthesia, and possible drug interactions, and it's easy to understand why it is important to prepare the person for the hospital experience.

Action Steps

Keep the person's best interest in mind.

• Consider how to avoid overnight hospitalizations. You may want to ask your physician whether the procedure can be done in the physician's office, a clinic or ambulatory care center, or a same-day or freestanding surgery center.
  
• Don't speak about the person's hospitalization in his/her presence as if (s)he were not there. Instead, involve him/her in discussions and decision-making as much as possible.
  
• Plan for hospitalization. You may be able to schedule an elective surgery. If so, you may want to arrange a face-to-face family meeting or conference call to discuss responsibilities. For example, one family member could take the person to the hospital for pre-admission testing, while another could remain at the hospital during surgery. Alternating visiting hours helps to share the burden of caregiving.
  
• If possible, try to get a private room. Although a private room is more expensive than a semiprivate room, the added privacy often helps to calm the person with Alzheimer's.
  
• Prepare for the hospital visit. Shortly before you leave for the hospital, use your best judgment to explain to the person that the two of you are going to spend a short time in the hospital. You may want to bring a box of familiar objects such as photographs, knickknacks, and an afghan or bedspread to help make the patient feel comfortable away from home.
  
• Stay with the person as much as possible. If the person must stay overnight, try to be in the room when (s)he awakes in the morning, when medications are given, when IVs or catheters are inserted, or when the physician makes rounds.
  
• Communicate with the person. For example, if the person can read, you may want to hang a note close to the hospital bed that says: "Mom, you've fallen down and broken a bone. Please rest quietly." Seeing this type of message may help calm the person when she wakes up in strange surroundings.

Work with hospital personnel.

• Make sure that all hospital personnel working with your family member are aware that (s)he has dementia. Although staff should be trained in meeting the needs of Alzheimer patients, you may want to provide them with additional input on your family member's personal habits and information on diet or eating habits. For example:
  
  • "This person can feed him/herself, but can only be given one food at a time."
  • "This person will be incontinent if not taken to the bathroom every 2-3 hours."
  • "This person can't tolerate any chocolate in his/her diet."

• To make sure you've covered all important points, you may want to type a list of tips for hospital staff before you leave for the hospital.

• If your family member with Alzheimer's tends to wander, alert hospital staff and see that they take measures to ensure the person's security.

• Ask questions about anesthesia. General anesthesia can sometimes depress the person's central nervous system. For this reason, some physicians prefer to use local anesthesia or spinal anesthesia. Talk to your physician and surgeon about these options.

• Try to obtain an early discharge. Work with your physician, nursing staff, and the hospital's discharge planner or social worker to make the transition from the hospital to home care or a less threatening health care setting.

In addition to the special tips that relate to persons with Alzheimer's disease, keep in mind the following general suggestions that relate to any hospital visit:

Before Admission

• Find out if the diagnosis requires admission. Find out if procedures, tests, or treatments demand admission to the hospital. In addition, determine if tests can be completed before admission (pre-admission testing) to shorten the hospital stay. Ask the physician about the anticipated "length of stay" or how long the person will be in the hospital.
  
• Don't be afraid to comparison shop. Check average daily costs of several hospitals where your physician works.
  
• Ask about consulting physicians. Find out if your physician plans to consult with other physicians and if these consultants could be seen before the person is admitted.
  
• Consider having the person record his/her wishes concerning medical care, such as life-prolonging treatment, in the event of a life-threatening situation.
  

During the Hospitalization

• Keep complete records.
  
• Monitor tests and medications that are ordered daily, and if and when they can be stopped.

• Ask about hospital equipment and if and when procedures or equipment can be discontinued.
  

In the Event of Surgery

• Ask questions. Be sure you understand the name of the operation, what the operation involves, and the person's diagnosis.

• Find out how often the surgeon performs the surgery and if the surgeon is an intern, resident, or board-certified surgeon. Also determine who will assist the surgeon and if an assistant is necessary.

• Pinpoint the expected length of hospitalization and the expected length of recovery. For example, will the individual tire more easily? When will the person be able to resume normal activities? How long must the person wait before doing any exercise such as walking? How long will the person be in pain?

By understanding the kinds of effects a hospital stay can have on the person with Alzheimer's and by preparing the health care staff and the person for the hospital stay, you and other family members can help minimize the traumatic effects of these changes for your family member.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Barbara Sand, RN, MSN, Assistant Professor, College of Nursing, University of Nebraska, Lincoln, Nebraska.

Special thanks to the following Chapters of the Alzheimer's Association: Cleveland and Northwest Ohio.

Other Resources include:

• Charles B. Inlander and Ed Weiner. Take This Book to the Hospital with You. New York: Pantheon, 1991.
• Nancy L. Mace and Peter V. Rabins, MD. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.
• "Financial and Health Care Benefits You May Need," Alzheimer's Association, 1991.
• "Steps to Choosing a Physician," Alzheimer's Association, 1991.
  

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Incontinence

Incontinence, which includes loss of bladder and/or bowel control and bedwetting, is a difficult problem if you are caring for an Alzheimer patient. Incontinence is common among Alzheimer patients -- especially those in the latter stages of the disease.

Although you can manage incontinence by changing the patient's routine, clothing or environment, at some point you will need to accept incontinence as a permanent condition of the disease.

If incontinence is a new behavior, your first and most important step is to identify the possible reasons for this loss of control. Ask yourself the following questions:

Medical Conditions

• Could the reason be medical? For example, could the person have a urinary tract infection, constipation, or a prostate problem?
  
• Is there an illness such as diabetes, stroke, or Parkinson's disease?
  
• Do movement difficulties make it hard for the patient to get to the bathroom in time?
  
• If the answer to any of these questions is "yes," you may want to consult with your physician.

Stress

• Is the incontinence caused by stress or movement? For example, does the person release urine with a sneeze, cough or laugh?

• Does fear of an embarrassing accident make the person want to continually visit the bathroom?

• Keep in mind weak pelvic muscles in a woman could cause uncontrollable loss of urine.

Medication

• Is the person on medication that might intensify the behavior?
  
• Is it possible that tranquilizers, sedatives, or diuretics contribute to incontinence? Keep in mind, for example, that some tranquilizers can relax the bladder muscles.
  
• Medications used to treat incontinence can cause such side effects as dry mouth and eye problems.

Dehydration

• Did you withhold fluids when the person started to lose bladder control? If so, the person might become dehydrated. Dehydration can, in turn, create a urinary tract infection which can lead to incontinence.

Diuretics

• Are you giving the person fluids that might produce a diuretic effect (increased urination)? Beverages such as coffee, colas, and tea might contribute to incontinence.

Environment

• Is it possible that the person can't find the bathroom?
  
• Does the person have too far to travel to reach the bathroom in time?
  
• Is the person afraid of falling?
  
• Are there obstacles in the path such as chairs or throw rugs?
  
• Is the path well lit?

Clothing

• Does the person have problems undressing in the bathroom?
  
• Are the zippers and buttons on clothing causing problems?
  
  

Action Steps

Innovate.

• Be willing to experiment with new concepts and ideas. Keep in mind that every person is different. What works for one person may not work for another.

Understand.

• Remember that accidents are embarrassing. Be matter-of-fact and understanding and avoid blaming or scolding the individual.

• When the person is successful, use praise, encouragement and reassurance.

Communicate.

• Encourage the person to tell you when (s)he thinks (s)he needs to use the bathroom. The person may not be able to say, "I need to use the bathroom."
  
• Watch for visible cues that the person needs to use the bathroom. For example, the person may get restless, make unusual sounds or faces, or pace around the room.

Plan ahead.

• Train yourself to respond to the person's routine and schedule. Identify when accidents occur and plan ahead.
  
• If an accident happens every two hours, you will need to get the person to the bathroom before that time.

• You might also find it helpful to keep a notebook or log that notes when the person uses the bathroom.

Change and adjust.

• Be patient and allow the person adequate time in the bathroom.
  
• In addition, rearrange the environment to make it easier for the person to use the bathroom. For example, leave on a nightlight in the bathroom and bedroom.
  
• Put a picture of a toilet on the bathroom door, or paint the bathroom door a color different than the wall.
  
• If accidents occur at night, consider a portable commode or urinal near the bed.

Simplify clothing.

• Keep the person's dress simple and practical. Instead of choosing clothing with zippers and buttons, choose easy-to-remove and easy-to-clean styles such as sweat pants with elastic waistbands.
  
• Consider using such products as pads or protective bedding, adult diapers, or panty liners for female patients.

Follow-up.

• Make sure the person uses the bathroom. You may need to assist in removing clothes, wiping or flushing.
  
• You might also want to stimulate urination by giving the person a drink of water or running water in the sink.
  
• Keep sensitive skin areas clean with regular washing and application of powder or ointment.

Control.

• To help control night incontinence, limit the person's intake of liquids after dinner and in the evening, and cut down on drinks such as cola, coffee, tea, and grapefruit juice.
  
• Encourage the person to drink at least one-and-a-half quarts (six cups) of fluids daily. For variety, you might want to introduce decaffeinated herbal teas, decaffeinated coffee, Jell-O or fruit juice.

Help the person with Alzheimer's retain a sense of dignity despite the problems with incontinence. Reassuring and nonjudgmental statements will help lessen feelings of embarrassment.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RNC, Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Orange County, Honolulu, Greater Washington, DC, Massachusetts, Cleveland, South Central Michigan.

Other Resources include:

• Miriam K. Aronson, Ed.D. "Understanding Alzheimer's Disease." New York: Scribner's, 1988.

• David L. Carroll. "When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide." New York: Harper and Row, 1989.

• Lisa P. Gwyther. "Care of Alzheimer's Patients: A Manual for Nursing Home Staff." Washington, DC: American Health Care Association and the Alzheimer's Association, 1985.

• Nancy L. Mace and Peter V. Rabins, MD. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

• Robinson, B. Spencer, L. White et al. "Understanding Difficult Behaviors: Some Practical Suggestions for Coping with Alzheimer's Disease and Related Illnesses." Ann Arbor: Eastern Michigan University Geriatric Education Center of Michigan, 1988.

 

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Nutrition

Providing the Alzheimer patient with nutritious meals and snacks is a problem for many caregivers. Often the patient can't sense or identify hunger or fullness or she need for fluids or foods with certain vitamins and minerals.

Predictability

The person's response to food is also difficult to predict. An individual might like specific foods such as turkey or chicken and then ---without warning -- turn away from these foods.

Poor Nutrition

The result of poor nutrition among Alzheimer patients is usually weight loss or gain and a variety of other symptoms including poor-fitting dentures, listlessness, and fatigue.

• A person who snacks regularly on such foods as candy and pastries often experiences a "sugar high" followed by complaints of being tired, depressed or hungry.
  
• "Junk foods" tend to make the person more restless and disoriented and reduce the craving for regular meals and more nutritious foods.
  
• The person may also experience bowel or bladder problems because of not drinking enough fluids or eating adequate fiber.

Disease Progression

As the disease progresses, providing the person with proper nutrition may become even more difficult.

• The individual might not understand the timing of meals or the difference between breakfast, lunch, dinner and snacks.
  
• In addition, you may have to offer more coaching at mealtime to help the person use utensils, for chewing, swallowing, or identifying various foods. For example, you may hand the person a spoon only to discover that (s)he can't remember how to use it.
  
• In another situation, a person who feels no need for food may clench his jaw tightly and refuse to let you put a utensil near his/her mouth. This person may not understand or remember what to do with food.
  

Action Steps

Watch out for danger signs and take action.

Look for early behavior changes such as increased snacking, drastic shifts in food likes and dislikes, dramatic weight losses or gains, or bowel problems. Experiment with changes in the person's diet to address these problems. You may need to allow for more time and offer more assistance at mealtime.

Monitor changes.

Check the person's weight weekly and, on the advice of your doctor, have regular blood work completed, as needed. Laboratory reports will help to identify problems with cholesterol, anemia, dehydration, or constipation.

Prepare food for easier eating.

If the person has problems with chewing, swallowing, or choking, try chopping or cutting the food into bite-size pieces. Use food to trigger the patient's attention.

• Use rough-textured foods such as toast or sandwiches made on toasted bread to stimulate the person's tongue and encourage chewing and swallowing.

• The person with Alzheimer's sometimes has little sensation of food in the mouth. By gently moving the person's chin, you can remind him/her to chew.

• Stimulate chewing by touching the person's tongue with a fork or spoon. By lightly stroking his/her throat, you can remind him/her to swallow.

Use soft foods to assist the person.

• A person who has problems chewing or who has poor-fitting dentures will benefit from foods of soft textures such as a peanut butter sandwich rather than a sandwich made of sliced meat, or a mashed potato rather than a fried potato.

• You may want to serve mashed or steamed vegetables, bite-sized pieces of cooked meat, or turkey or chicken salad instead of sliced meat.

• If swallowing becomes a problem, put food into a food processor or blender before serving it. Also remember that soups with two consistencies may confuse the individual.

Make knife-and-fork foods into finger foods.

If the person's regular breakfast consists of scrambled eggs and bacon, cut the food into small squares. You could also combine cheese, meat and eggs into an omelet so the person can pick up the food with his fingers.

Proceed with caution in using liquid supplements.

Liquid food supplements are often costly, high in sodium, and can sometimes be prepared more economically at home. If the person is eating regular meals, use supplements as an occasional between-meal or late-night snack or when the person refuses to eat a regularly scheduled meal. When considering supplements, consult with your physician.

Work to make mealtime calm and comfortable.

• Keep the environment quiet and free from such distractions as the television or radio.
  
• Try to maintain regular meals with the family for as long as possible. Social interaction and conversation are important.
  
• Feed the person at regular intervals. Many caregivers find it helpful to serve several small meals rather than three large meals.
  
• Be consistent. Feed the person in the same area at every meal and at the same approximate times each day.
  
• Keep the table setting simple. Avoid placing objects on the table that might distract or confuse the individual.
  
• Put condiments on food before serving it to the person.
  
• Set the table only with the utensils needed to eat the meal.
  
• Avoid using plates or placemats with patterns that might confuse the individual.
  
• Use a plate that is a different color from the placemat.
  
• Offer one food item at a time. A full plate with a meat, potato, and vegetable might overwhelm and confuse the person.
  
• Rely on nutritious finger foods as between meal supplements.
  
• Encourage independence for as long as possible by allowing the person to use utensils and eat finger foods. Holding a cup and drinking fluids through a straw will also give the person a sense of accomplishment.
  
• Serve thick fluids to prevent choking. If choking occurs, be prepared to use the abdominal thrust (also known as the Heimlich Maneuver) to dislodge food.
  
• Prepare the meal ahead of time so you can stay with the person during the meal. (S)he may mimic your eating behavior.
  
• Reduce between-meal snacks to ensure that the person eats at regular meals or provide the person with fruit or nutritious snacks.
  

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Paula Pless, COTA, Manor Oak Skilled Nursing Facility, Buffalo, New York.

Special thanks to the following Chapters of the Alzheimer's Association: Atlanta, Greater Washington, DC, Eastern Massachusetts, St. Louis, Western New York, Cleveland, Columbus (Ohio), Northern Virginia, and South Central Michigan.

Other Resources include:

• David L. Carroll. "When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide." New York: Harper and Row, 1989.

• Donna Cohen, Ph.D., and Carol Eisdorfer, Ph.D., MD. "The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders." New York: Norton & Company, 1986.

• Nancy L. Mace and Peter V. Rabins, MD. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

101 Things to Do with a Person Who Has Alzheimer's Disease

Daily activities for people with AD (Alzheimer's Disease) tend to change as the disease progresses. Alzheimer's Disease (AD) tends to limit concentration and cause difficulties in following directions. These factors can turn simple activities into daily challenges. Individuals with AD often don't start or plan activities on their own. When they do, they may have trouble organizing and carrying out the activity. Many caregivers state that the individual often sits in one area of the room, paces the floor, or searches for familiar objects with little interest in doing the things that had once brought meaning and pleasure to life.

By using a variety of activities matched to the person's abilities, the caregiver can help the family member enjoy his current level of skill and talent, as well as retain his sense of positive self-esteem. Here are some ideas to help pass the time throughout the year.

1. Clip coupons	2. Sort poker chips
3. Count tickets	4. Rake leaves
5. Use the carpet sweeper	6. Read out loud
7. Bake cookies	8. Look up names in phone book
9. Read daily newspaper out loud	10. Ask a friend, neighbor, church acquaintance who has a baby to visit
11. Listen to polka music	12. Plant seeds indoors or out
13. Look at family photographs	14. Toss a ball
15. Color pictures	16. Make homemade lemonade
17. Wipe off the table	18. Weed the flower bed
19. Make cream cheese mints	20. Have a spelling bee
21. Read "Reader's Digest" out loud	22. Fold clothes
23. Have a calm pet in to visit	24. Cut pictures out of greeting cards
25. Wash silverware	26. Bake homemade bread
27. Sort objects such as beads by shape or color	28. Sing Christmas carols
29. Say, "Tell me more" when they start talking about a memory	30. Put silverware away
31. Make a Valentine collage	32. Play favorite songs and sing together
33. Take a ride	34. Make a cherry pie
35. Read aloud from labels	36. Dye Easter eggs
37. Make a basket of socks	38. Take a walk
39. Reminisce about the first day of school	40. String Cheerios to hang outside for the birds
41. Make a fresh fruit salad	42. Sweep the patio
43. Color paper shamrocks green	44. Fold towels
45. Have afternoon tea	46. Remember great inventions
47. Play "Pictionary"	48. Paint a sheet
49. Cut out paper dolls	50. Identify states and capitols
51. Make a family tree poster	52. Color a picture of our flag
53. Cook hot dogs outside	54. Grow magic rocks
55. Water house plants	56. Reminisce about the first kiss
57. Play horse shoes	58. Dance
59. Sing favorite hymns	60. Make homemade ice cream
61. Force bulbs for winter blooming	62. Make Christmas cards
63. Sort playing cards by their color	64. Write a letter to a family member
65. Dress in red on a football Saturday	66. Pop popcorn
67. Name the presidents	68. Give a manicure
69. Make paper butterflies	70. Plant a tree
71. Make a May basket	72. Make homemade applesauce
73. Finish famous sayings	74. Feed the ducks
75. Mold with PlayDoh	76. Look at pictures in a National Geographic
77. Put a simple puzzle together	78. Sand wood
79. Rub in pleasant-scented hand lotions	80. Decorate paper place mats
81. Arrange fresh flowers	82. Remember famous people
83. Straighten underwear drawers	84. Finish nursery rhymes
85. Make peanut butter sandwiches	86. Wipe off patio furniture
87. Cut up used paper for scratch paper	88. Take care of a fish tank
89. Trace and cut out leaves	90. Ask simple questions
91. Finish Bible quotes	92. Paint with string
93. Cut out pictures from magazines	94. Read classic short stories
95. Put coins into a jar	96. Sew sewing cards
97. Put bird feed out for the birds	98. Clean out a pumpkin
99. Reminisce about a favorite summer	100. Roll yarn into a ball
101. Make a birthday cake

 

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Criteria for Effective Therapeutic Programming

• Be purposeful for the individual.
• Provide opportunities for success.
• Accommodate individual interests and hobbies.
• Include personal care in the overall daily program.
• Emphasize the value of human relationships.
• Provide structure seven days per week, 24 hours per day.
• Target specific interventions to distract and occupy individuals with behavioral difficulties.
• Be evaluated routinely to determine individual reactions to activity programming.

Specific criteria for individual activities indicate they:

• Affirm dignity.
• Break tasks down into steps.
• Communicate purpose and meaning for the individual.
• Not reinforce inadequacy.
• Establish new roles and reestablish old roles.
• Fulfill basic needs and are fun.
• Guide use of remaining skills.
• Invite mastery, self-identity and self-esteem.
• Respect the individual.
• Be voluntary.

Source: Guidelines for Dignity. (1992) National Alzheimer’s Association

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More:Activities

Daily activities for Alzheimer's patients tend to change as the disease progresses. Alzheimer's disease tends to limit concentration and cause difficulties in following directions. These factors can turn simple activities into daily challenges.

Individuals with Alzheimer's disease often don't start or plan activities on their own. When they do, they may have trouble organizing and carrying out the activity. Many caregivers state that the individual often sits in one area of the room, paces the floor, or searches for familiar objects with little interest in doing the things that had once brought meaning and pleasure to life. By using a variety of activities matched to the person's abilities, the caregiver can help the family member enjoy his current skills and talents. A daily routing of exercise and activities can help the person with Alzheimer's retain his sense of positive self-esteem. To decide which activities are appropriate, start with some of the following ideas.

Action Steps

Take stock.

Examine the person's past activities and hobbies and then figure out how to adapt or simplify these activities to match the patient's abilities.

Build in structure.

Don't be afraid to give activities structure and routing. It is fine if the person does the same thing at the same time every day. If (s)he has a sense of routine, there is a greater chance that (s)he will look forward to an activity with a positive attitude. The person may not remember how many times (s)he has been involved in a certain activity or even if (s)he did the same activity that day.

Offer support.

Focus on offering guidance and supervision and doing things with the person with Alzheimer's disease. In most cases, you will need to show the individual how to perform the activity by providing simple, step-by-step directions. Doing such simple tasks as sweeping or dusting can help the person with Alzheimer's disease experience a sense of accomplishment and satisfaction.

Look for favorites.

Keep in mind that the person who once enjoyed drinking coffee and reading the newspaper in the morning may still find that activity enjoyable. Don't be concerned that (s)he might not be able to make sense of that (s)he's reading. The real point is that it is familiar and (s)he enjoys doing it.

Be flexible.

Adjust to the person's level of ability and look for hidden messages. When a person insists that (s)he doesn't want to do something, it might be his/her way of telling you that (s)he can't do it or fears doing it. If an individual patient has problems with one part of a task such as separating dishes and putting them into a cabinet, you might want to take over part of the task and ask the person to hand you the dishes one by one.

Stress involvement.

Emphasize activities that help the individual feel like a valued part of the household and experience a feeling of success and accomplishment. Examples include gardening, raking leaves or simple household chores. Working along with you on such tasks as setting the table, wiping countertops, folding napkins, or emptying wastebaskets, will help the person feel useful and sociable.

Don't forget the family.

Plan for social activities such as family picnics or birthday parties, but make special allowances for the person with Alzheimer's disease. Allow for frequent rest periods and try to prevent family members from overwhelming the individual.

Focus on enjoyment, not achievement. Help the individual find activities that build on remaining skills and talents. A person who had once been a professional artist might become frustrated over the declining quality of his/her work, but someone who had never pursued art as a career might enjoy a new opportunity for self-expression.

Be realistic and relaxed.

Don't be concerned about filling up every minute of the day with activity. Because of a shortened attention span, the person with Alzheimer's Disease needs a balance of activity and rest and may need more frequent breaks and changes in activities.

Relate activity to work life.

A person who once worked in a business office might enjoy putting coins in holders, doing routing mailings, or making lists on a legal pad or in a notebook. At the same time, someone who had been a farmer or gardener would probably enjoy working in the yard. Activities that relate to a former career are often the most familiar, reassuring and enjoyable for the patient.

Specific activity areas include the following:

• Self-expression and Crafts - Many people enjoy activities that offer an opportunity for self-expression. These activities include painting, drawing, dancing, singing, playing a musical instrument, working with nontoxic clay, or caring for plants.
  
• Exercise - Consider playing catch with a "soft" ball or taking regular walks with the individual to the grocery store or around the local mall. Household tasks such as raking leaves or sweeping the floor also offer the person an opportunity for exercise.
  
• Music and Dancing - Remember that many people with Alzheimer's disease enjoy singing familiar songs or hymns, practicing dance steps learned earlier, or playing a musical instrument.
  
• Playing with Children - Plan activities so that both the child and the person with the disease have a positive experience. Keep in mind, however, you may need to monitor the individual's reactions. Seeing a child cry might worry or frighten the person.
  
• Magazines, Albums, Picture Books - Spend time sitting with the person and looking at pictures. You could also give the individual the opportunity to look through travel magazines and cut out pictures of favorite scenes.
  
• Reading - Try reading stories from a favorite newspaper or magazine, or try reading poetry or favorite stories.
  
• Separation Tasks - People who once enjoyed playing bridge or cards might find pleasure in simple card games, or - depending on ability level - in separating different types of cards. Other possibilities include separating nuts and bolts from nails, sorting buttons and coins.
  
  
• Working with Cloth - Consider giving the person an opportunity to fold or work with pieces of cloth or clothing. Some people might enjoy sorting or sewing together different types of material such as terry cloth, denim, corduroy, or cotton.
  
• Observations and Excursions - Experiment with watching old videos of the 1950s or 1960s or old movies of the 1930s and 1940s. Other individuals may enjoy watching sporting events, riding in the car, going out for lunch, or taking trips to the zoo, park of art museum.

The person with Alzheimer's disease needs activity and exercise that bring about a sense of involvement, accomplishment and well-being. By matching the person's abilities to the level and type of activities you can enhance feelings of satisfaction.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RNC, Director, Clinical Services, Center for Alzheimer's Disease and Related Disorders, Southern Illinois University, School of Medicine, Springfield, Illinois; and Lisa P. Gwyther, ACSW, Educational Director, Joseph and Kathleen Bryan Alzheimer's Disease Research Center of Duke University, Durham, North Carolina. Special thanks to the following Chapters of the Alzheimer's Association: Eastern Massachusetts, South Central Michigan, and Cleveland.

Other resources include:

• David L. Carroll. "When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide." New York: Harper and Row, 1989.
  
• Howard Gruetzner. "Alzheimer's: A Caregiver's Guide and Sourcebook." New York: John Wiley and Sons, Inc., 1988.
  
  
• Lisa P. Gwyther. "Care of Alzheimer's Patients: A Manual for Nursing Home Staff."Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
  
  
• Nancy L. Mace and Peter V. Rabins, MD. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press. 1991.
  
  
• Carmel B. Sheridan. "Failure Free Activities for the Alzheimer's Patient." Oakland: Cottage Books.
  
  
• Jitka Zgola. "Doing Things: A Guide to Programming Organized Activities for Persons with Alzheimer's Disease and Related Disorders." Baltimore: Johns Hopkins University Press, 1987.
  
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Are you a Healthy Caregiver?

Are you so committed to caregiving tasks that you may have neglected your own physical, mental, and emotional well-being? The following questions can help you determine if you are putting your health at risk.

Do you visit your physician annually?
The best thing you can do for the person with Alzheimer's disease is to stay healthy. Respect what your body is telling you. Take exhaustion, stress, sleeplessness and changes in your appetite or behavior seriously. Ignoring these symptoms can cause your physical and mental health to decline. And, if you are a woman, your role as an Alzheimer's caregiver is most likely occurring at a time in your life -- often during menopause or after menopause -- when you need to pay even closer attention to your own health. Various treatments, such as estrogen replacement therapy and calcium supplements, can be beneficial in protecting a woman's health later in life. You should discuss these treatments and other health matters with your doctor.

Do you accept assistance from others?
You can't do everything. Attempting to handle everything yourself will only lead to burnout, depression, and resentment toward the person for whom you are caring. You are not failing as a caregiver by asking others for assistance. When friends and family offer help, accept it. Also look into community resources that offer respite from caregiving responsibilities.

Do you talk to others about your feelings?
You may think that no one understands what you are going through. Holding in your feelings, however, will only make you feel isolated and emotionally neglected. Sharing your experiences with others may help you put things into perspective.

Take care of yourself!

There are seven simple steps you can take to ensure that you are a healthy caregiver:

1. See your physician regularly.
2. Get screened for stress and depression.
3. Get plenty of rest.
4. Eat well-balanced meals.
5. Exercise regularly.
6. Accept help from others.
7. Call the Alzheimer's Association.

The Alzheimer's Association -- an important resource for caregivers.
The Alzheimer's Association's network of chapters provides support and programs to help reduce caregiver stress. The Association offers:

• Support groups and telephone helplines, so that you have an outlet to express your feelings to others who are also affected by the disease.
• Referrals to local resources, such as physicians and clinics who specialize in diagnosing and treating Alzheimer's disease; respite and long-term care services; financial and legal counseling; and government and community organizations.
• Educational resources, including brochures, newsletters, videos and a Web site that offer advice for caregivers.
• Ways to become involved in advocacy efforts that have helped to increase research funding and change how families of people with Alzheimer's disease are reimbursed for care services.
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Common Negative Feelings Experienced by Caregiver Families

• Anger…
  • At the family member with Alzheimer's disease
  • At themselves, the caregivers
  • At other family members and friends
  • At health care professionals
  • At God

• Denial…
  • Of the disease itself
  • Of the need for assistance

• Depression…
  • Over the lost relationship with the Alzheimer's person
  • Over the loss of family continuity

• Fear…
  • Of the genetic consequences
  • Of the future

• Guilt…
  • Over past experiences that may have caused the person's condition
  • Over the caregiver's own ability to still enjoy life
  • Over anger with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving
  • Over negative feelings and/or problems experienced with the Alzheimer's Individual
  • Over the ability or inability to provide adequate care

• Indecision…
  • About financial and legal issues
  • About medical care
  • About living arrangements

• Self-pity…
  • Over the unfair circumstances in life

• Shame and embarrassment…
  • Over the challenging behaviors exhibited by the Alzheimer's person

Sources: Oliver, R. and F. Bock 1987. "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide." New York: Dodd, Mead and Company, Inc. "Just the Facts and More: Grief, Mourning and Guilt." 1992. Chicago: Alzheimer's Disease and Related Disorders Association, Inc.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping Strategies for Caregivers

1. Reinforce your identity separate from the patient's identity.
   
2. Always move from your center, not the patient's center.
   
3. Tap into your unused, unlimited inner strengths and resources.
   
4. Continually acknowledge all feelings - both positive and negative. Reinforce positive feelings.
   
5. Be responsible and take control.
   
6. Get information and get help.
   
7. Work out your own plan for surviving whole.
   
8. Accept what cannot be changed.
   
9. Eliminate the words "blame" and "excuse" from your vocabulary.
   
10. Make not promises about the future.
    
11. Explore and face the worse possible events in your future.
    
12. Use respite care regularly for extended blocks of time.
    
13. Develop an emotional detachment from your caregiving tasks.
    
14. Train yourself to be pro-active rather than reactive.
    
15. Enjoy humor regularly. Humor assists the immune system.
    
16. Get a support system that works for you.
    
17. Be flexible, willing to learn, to adapt, to change and grow at any age.
    
18. "Regroove" your brain with positive reinforcement.
    
19. Develop an exercise regimen for both the body and soul.
    
20. Look for the small joys.

Source: Lela Knox Shanks, 1994

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Hallmarks of Good Caregiving

1. Work out your own individual plan for survival.
   
2. There is no one right way, just YOUR way.
   
3. Our loved ones may not know who we are, but WE know who they are.
   
4. The patient has no control over what is happening to him or her.
   
5. You cannot reason with dementia.
   
6. There are workable solutions to every problem.
   
7. Persons with Alzheimer's disease can still learn.
   
8. Creativity is infinite.
   
9. The person with Alzheimer's disease continues to be a human being.
   
10. Find the hidden treasure in Alzheimer's disease.

Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Driving

Driving is a complex activity which necessitates quick reactions, clear sensory abilities, and split-second decisions. For the person with Alzheimer's disease, driving becomes a safety issue. While he or she may not recognize that changes in cognitive and sensory skills impair driving abilities, you and other family members will need to be firm in your efforts to prevent the person from driving.

Considering the person's feelings of loss of independence can aid families in their actions to help the person understand why he/she can no longer drive safely. Assisting the person with dementia to make the decision to stop driving can be useful in helping to maintain a positive sense of self-esteem.

Study results

To better understand the effects of Alzheimer's on driving, research is focusing on people with early Alzheimer's disease. Results from studies conducted at Johns Hopkins University and at the National Institute on Aging (NIA) support the belief that people should not be allowed to drive after a diagnosis of Alzheimer's disease.

In the Hopkins study, more than 40 percent of patients studied had been in an accident after a diagnosis of the disease. In addition, 11 percent had caused accidents; 44 percent had gotten lost routinely; and 75 percent continually drove below the speed limit.

In California, preliminary road and laboratory studies (at Sepulveda Veterans Administration Medical Center and University of California at Los Angeles - UCLA) indicate that even persons with early Alzheimer's have markedly eroded driving skills.

As a caregiver, it is important that you take time to evaluate the person's driving ability and be aware of methods you can use to discourage the person from driving.

Action Steps

Assess the person's ability to drive.

• Consider having the impaired person's driving ability tested. Some state agencies have special drive tests to determine how well a person sees, judges distance, and responds to traffic. Ask the person who administers the test to explain the results to you and the person with Alzheimer's.
• Look for signs of driving problems. Be concerned if he forgets how to locate familiar places, doesn't observe traffic signs, makes slow or poor decisions in traffic, drives at an inappropriate speed, or becomes angry or confused while driving.
• Learn about your state's driving regulations. In some states, such as California, the physician must report a diagnosis of Alzheimer's to the health department, which then reports it to the department of motor vehicles. That agency then may revoke the person's license. Your local Chapter of the Alzheimer's Association may have information available on driving regulations in your state.

Strongly discourage driving if the person with dementia cannot drive safely.

• Instead of allowing the person to drive, tell him or her that you can drive or arrange for someone else to drive. If you don't know how to drive, investigate drivers' education courses and defensive driving programs designed for adults. For more information on these courses, contact the American Association of Retired Persons (AARP).
• Solicit the support of others. Ask your physician to advise the impaired person not to drive. Involving your physician in a family conference on driving is probably more effective than trying by yourself to persuade him/her not to drive. Ask the physician to write a letter stating that the person with Alzheimer's must not drive. Or ask the physician to write a prescription that says, "No driving." You can then use the letter or prescription to tell your family member what's been decided.
• Ask a respected family authority figure or your attorney to reinforce the message about not driving. Also ask your insurance agent to provide documentation that your loved one will no longer be provided with insurance coverage.
• Experiment with ways to distract the person from driving. Mention that someone else should drive because you're taking a new route; because driving conditions are dangerous; because he/she is tired and needs to rest. Tell him that he/she deserves a chance to sit back and enjoy the scenery; or that you don't want him/her to drive because you're concerned about his safety. You may also want to arrange for another person to sit in the back seat to distract your family member while someone else drives. If the disease is in an advanced stage, or there is a history of anger and aggressiveness, it's best not to drive alone with the person.
• Control access to the car keys. Designate one person who will do all the driving and give that individual exclusive access to the keys.
• Disable the car. If the person with Alzheimer's is insistent about driving, remove the distributor cap or the battery or starter wire. Or ask a mechanic to install a "kill wire" that will prevent the car from starting unless the switch is thrown. Or give the person a set of keys that looks like her old set, but that doesn't work to start the car.
• Move the car. Drive the car to another block, a neighbor's driveway, a private garage or lot.
• In some states it might be best to alert the Department of Motor Vehicles. Write a letter directly to the authority and express your concerns, or request that the person's license be revoked. The letter should state that "(the person's full name) is a hazard on the road," and offer the reason (Alzheimer's disease). The state may require a statement from your physician that certifies the person is no longer able to drive.
• Substitute the person's driver's license with a photo identification card. Take no chances. Don't assume that taking away her driver's license will discourage driving. The person may not remember that she no longer has a license to drive, or even that she needs a license.
• Consider selling the car. By selling the car, you may be able to save enough in insurance premiums, gas, oil and maintenance costs to pay for public transportation, including taxicab rides.
• Be firm and positive about driving. Avoid arguing with the person, or giving long explanations for why he/she cannot drive. Spend your time and energy helping to preserve the person's dignity by focusing on the activities he or she can still do and enjoy.
  

References

• Lucas-Blaustein, M.J., et al (et alia). (1988). Journal of American Geriatrics. 36:1087-1091.
• Friedland, R.P., et al (et alia). (1988). Annals of Neurology. 24:782-786.
• Fitten, L.J., et al (et alia). (1991). Gerontological Society of America, Annual Meeting. Abstract.
  

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was L. Jaime Fitten, MD, Associate Professor Psychiatry and Medicine/Geriatrics, UCLA (University of California at Los Angeles) School of Medicine and Chief Geriatric Psychiatry, VA (Veterans Administration) Medical Center, Sepulveda, California.

Special thanks to the following Chapters of the Alzheimer's Association:

Northern Virginia; Greater Philadelphia; Midlands Chapter (formerly Omaha and Eastern Nebraska); Honolulu, Hawaii; New York City.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Telling the Patient, Family and Friends

When you learn that a member of your family has Alzheimer's disease, you may become overwhelmed by feelings of confusion, guilt and loneliness. Moreover, as you assume the role of caregiver, you may feel hesitant to reveal the diagnosis to the rest of the family, to friends, and - perhaps most importantly - to the person with the disease, for fear their reactions will be difficult to manage. Following are some guidelines that you may use to decide how to discuss the disease with others.

Action Steps

Consider the person diagnosed.

• In deciding whether or not to tell the person about the diagnosis, respect his/her right to know what's wrong, but also be sensitive to the person's feelings and emotional state, medical condition, and ability to remember, reason and make decisions.
• Keep in mind that the person with Alzheimer's may suspect that something is wrong long before a doctor reaches a diagnosis. If you fail to give her any explanation, she may assume the worst. On the other hand, if you discuss the problem with her, she may feel relieved to learn that she has a physical illness, rather than a psychological one. Furthermore, the informed person may be able to participate in important medical, legal, financial and personal planning depending on the progression of the disease symptoms.
• Rely on professional experience. You may want to inform the person about the diagnosis through a "family conference" with the patient, other caregivers and a social worker. You may also want to involve a physician who has experience working with cognitively impaired individuals.
• Be sensitive to the person's reaction. He may not be able to understand all that the diagnosis means or he may deny your explanation. If this is the case, it's probably best to accept his reaction and avoid further detailed explanations of the disease.
• Reassure the person. Let the person know that you'll provide ongoing help and support, and do all you can to make your lives together fulfilling.
• When you sense the time is right, provide the person with follow-up information you feel she would benefit from knowing, such as an explanation of symptoms and the importance of continued care. For example, you may say, "Mom, because of your memory and other problems, you may have to let people help you more than you have in the past." (Note: You don't have to use the phrase "Alzheimer's disease" if you think it might upset the person.)
• Treat the person as an adult, and don't downplay the disease. As the disease progresses, remain open to the person's need to talk about his illness. The person may ask you about such activities as working, driving, or managing finances. Or the person may want to express such feelings as anger, frustration, and disappointment. Be aware of nonverbal signs of sadness, anger or anxiety, and respond with love and reassurance.

Inform family and friends.

• Be honest about the person's condition. You'll probably feel relieved after discussing the disease with other family members and close friends. Be sure to explain that Alzheimer's is a medical condition and not a psychological or emotional disorder or contagious virus.
• Provide others with adequate information on Alzheimer's disease, including a description of common symptoms. The more family and friends learn about the disease, the more comfortable they may feel around the person. Share educational material from the Alzheimer's Association, such as the brochure, "When the Diagnosis is Alzheimer's." You may also want to invite close friends and family members to accompany you to a support group meeting sponsored by a local Chapter of the Alzheimer's Association.
• Don't leave yourself out of the conversation. Explain how the responsibility of caregiving has affected your life or may change your life in the future, so that others will have a better sense of how they can help.
• Ask for family support. Have several tasks in mind for people who say, "Please let me know if there's anything I can do to help you." Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
• Ask people to come for short visits, but suggest they call you before stopping. Keep in mind that the person may become anxious if too many people visit at one time. In addition, recommend specific activities such as playing a simple game, taking a walk, or looking through a book of photographs with the person.
• Don't overlook the role of children and teenagers in the life of your family member. Young children often are able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.
• Inform neighbors about the person's condition. Even if you've never socialized with your neighbors, they'll appreciate knowing the truth about the person's condition. They may have already observed the family member wandering through the neighborhood or acting strangely. If they understand the diagnosis, they'll be more likely to call if they sense the person needs help. Or they may volunteer to help you in an emergency.

Be true to yourself and to the person with Alzheimer's.

• Realize that some friends and even some family may drift out of your life. Some people may feel uncomfortable around the impaired person while others may not want to get involved in caregiving. Don't let these attitudes interfere with your commitment to caring for your family member and for yourself.

 

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RN.C., Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Dallas, Texas; Eastern Massachusetts; Honolulu, Hawaii; Northern Virginia; Puget Sound, Washington; St. Louis, Missouri; and Western North Carolina.

Other resources include:

• Donna Cohen, Ph.D., and Carl Eisdorfer, Ph.D., M.D. (1986). "The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders." New York: New American Library.
• "When the Diagnosis is Alzheimer's." Alzheimer's Association, 1990.*
• "If You Have Alzheimer's Disease: What You Should Know, What You Can Do." Alzheimer's Association, 1991.*
• "Alzheimer's Disease: Especially for Teenagers." Alzheimer's Association. 1987.

* These materials are available through your local Chapter of the Alzheimer's Association.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Long Term Care Is a Woman's Issue

Women Are the Caregivers

• Seventy percent of unpaid caregivers are women.
• The average woman can expect to spend more time caring for an elderly parent than she spends caring for a child.
• Thirty-five percent of women caring for the elderly are over 65, and 10 percent are over 75.
• One woman in five has a parent living with them, and more than 50 percent of caregivers work outside the home.
• Ninety-three percent of the 1.5 million long term care workers in the United States are women.
  

The Effects of Caregiving on Women

• Caregiving is hard physical work that increases a woman's chances of injury.
  • One in eight Alzheimer's Disease family caregivers becomes ill or injured as a direct result of caregiving.
  • One in three use medication for problems related to caregiving.
• More than 50 percent of caregiving women experience depression, anxiety, exhaustion, and feelings of helplessness.
• Caregiving responsibilities can also endanger a woman's future economic security.
  • Time away from the job to care for a family member with a disability or chronic illness is reflected in lower wages, lower Social Security benefits, and higher health costs.
    

Women Need Long Term Care

• Seventy-five percent of all nursing home residents 65 years or older are women.
  • The typical nursing home resident is an 85-year-old woman who enters a nursing home because she lives alone or no caregiver is available.
• Eighty percent of the elderly living alone are women.
• Seventy-five percent of the elderly are women unable to pay for long term care or to purchase long term care insurance.
  • In 1990, the yearly median income of women 65 years and over was $8,044.
    

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Options for Caregivers

• Support Groups

• Education
  
  • Materials
  • Seminars
  • Caregiver Training
    
• Home Health Agencies
  
• Respite Care Programs
  
  • In-home
  • Short-term stay out-of-home
  • Adult day care

• Informal Support Network
  
  • Family
  • Friends
  • Neighbors
  • Church/Synagogue

• Community Social Services
  
  • Mental health
  • Hospice
  • Home-delivered meals
  • Case management

• Long-term Care

• Do It All Alone…

Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Organization: A Key to Caregiving

Paperwork is an inevitable element of caregiving. Service providers require financial information and health professionals require insurance information and completed medical forms. As a caregiver, you will want to locate all legal, financial and insurance documents, which belong to your loved one. In most cases, locating, reviewing and organizing documents is time-consuming and tedious. You may not know where certain information is located. In the case of persons with Alzheimer's disease, the paperwork may not be filed where it normally would be for your loved one. If this is the case, you may find yourself sorting through piles of papers located in different places, both inside and outside of the house. Listed below are a few common places to look for records:

• File cabinets
• Dresser or desk drawers and closets
• Attic, garage and basement
• Under the bed
• Scrapbooks
• Safe deposit box or safe
• Attorney's or accountant's office
• Another relative's home
• The home of the executor of the will

To help you organize your search, you may consider developing a care log that itemizes the location and status of various documents. Once you have found certain papers, you will want to keep track of where they are located and what action needs to be taken. The care log below is an example of the type of information you may need to collect.

Sample Care Log
LA - located and available	UD - needs to be updated	C - make a duplicate
LN - located, but not available	GD - get document	L - lost, request duplicate
DOCUMENTS	STATUS	COMMENTS
Legal documents
Birth Certificate	________
Social Security card	________
Marriage license(s)	________
Divorce decree(s)	________
Military records	________
Will	________
Living will	________
Power of attorney	________
Health care power of attorney	________
Legal agreements	________
Financial documents
Checking account	________
Savings account	________
Retirement account	________
Stock certificates	________
Savings bonds	________
Real estate deed/title	________
Automobile title	________
Investment income	________
Other income	________
Mortgage statement	________
Property tax statement	________
Lease agreement	________
Utility & phone statements	________
Doctor/hospital bills	________
Credit cards	________
Insurance documents
Auto	________
Homeowners	________
Life insurance	________
Medicare	________
Medigap	________
Long-term care	________
Disability	________
Liability	________
Other ________________________________________
Other ________________________________________

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Positive Aspects of Caregiving

• Caring for someone you love.
  
• Being needed.
  
• Feelings of accomplishment
  
• Finding personal strength and courage previously unknown.
  
• Families become closer.
  
• Character building - patience, forgiveness, and humor.
  
• Learning to value the present.

Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Services You May Need

There are many types of services available to assist you throughout the course of Alzheimer's disease. Although you may not need all these services immediately after receiving a diagnosis, it's important to identify what's available in your community. Call your local chapter of the Alzheimer's Association to find resources in your area.

Medical Services. Families report they are most satisfied with a specialist who is well informed about Alzheimer's disease. This may be a neurologist, geriatrician, psychiatrist or a family doctor who is experienced in treating people with the disease.

Legal Services. Legal planning should begin soon after a diagnosis has been made. Planning should involve putting together documents that authorize another person to make health care and financial decisions, including plans for long term care coverage. An attorney can explain issues related to durable power of attorney for health care and finances, living wills and trusts, future medical care, housing and other key considerations. There are elder law attorneys who specialize in issues affecting older adults. If the person with Alzheimer's has the legal capacity - the level of mental functioning necessary to sign official documents - he or she should actively participate in legal planning.

Financial Services. Important financial decisions will have to be made throughout the course of the disease. Attorneys, accountants and financial planners can help. If possible, include the person with Alzheimer's in the discussions. Financial assistance and health care benefits may be obtained through several government sources. There are two types of entitlement programs that persons with Alzheimer's may apply for: those that provide income and those that help pay for medical expenses. Some of these include Social Security Disability, Supplemental Security Income, General Public Assistance, Medicare and Medicaid. Contact the government agency involved directly or your local Alzheimer's Association chapter for information.

Helpline. The Alzheimer's Association Helpline is staffed by trained volunteers experienced in issues relate to the disease. Helpline specialists are available to offer ongoing support, suggest tips for caregiving, and provide specific information on resources that may help you.

Support Groups. Your local chapter of the Alzheimer's Association also provides support groups for caregivers and family members throughout the disease process. In some cases, support groups may be available for persons with the disease. You can talk with others who are experiencing similar situations in a safe, nonjudgmental group setting.

Information. You can find information on everything from diagnosis and treatment to caregiving and support groups through the Alzheimer's Association. Most chapters make available an extensive collection of brochures, books and videos. You can also find information on the Association's web site at http://www.alz.org/index.asp

As the disease progresses, you may need help with providing care. Care services generally fall into the categories of respite care, residential care and hospice. The Alzheimer's Association can assist you in determining what type of care is available in your community.

"Respite Care" refers to a short time of rest or relief. It allows caregivers a break from day-to-day duties and provides the person with Alzheimer's opportunities to interact with others. Three types of respite care most commonly available are:

• Day services. Programs in adult day centers can give the person with Alzheimer's an opportunity to socialize with others, exercise and engage in simple activities.
• Home care. Visiting nurses, home health aides, homemakers and volunteers can provide services at home such as bathing, dressing or companionship while you go out for a while.
• Residential Respite. Some hospitals, nursing homes and other residential facilities offer short-term stays of a few days or a few weeks.

Residential Care. The type of residential care you may need will probably vary depending on the stage of the disease. Housing services are generally grouped in two categories:

• Assisted Living. Also known as board and care homes, assisted living is a term for residential care settings that combine housing, personalized supportive services and health care. These setting offer more services than independent living but fewer than a skilled nursing facility.
• Skilled Nursing. Also known as nursing home care, this type of care provides an intermediate or skilled nursing setting for those who require more services. Some are designed to provide specialized care for persons with dementia.

Hospice services. Designed to help people near the end of life, hospice programs combine at-home and skilled nursing services. Today, more hospices are offering specialized programs for persons with Alzheimer's disease.

Other Support Services. Other support services may be available from your local Department on Aging, Department of Health, senior citizens' agency, religious-affiliated service agencies and patient education departments of hospitals. Also, private physicians, social workers, nurses, psychologists and counselors may provide such services.

Additional Resources:

If You Have Alzheimer's Disease: What You Should Know, What You Should Do

Especially for the Alzheimer Caregiver

Caregiver Stress: Signs to Watch for, Steps to Take

Steps to Understanding Legal Issues: Planning for the Future

Someone to Stand by You ©1998. Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved. Alzheimer's Association, 919 North Michigan Ave., Suite 1000, Chicago, Illinois, 60611-1676 1-800-272-3900 TDD (Telecommunications Device for the Deaf): (312) 335-8882. http://www.alz.org/index.asp, e-mail: info@alz.org.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Surrogate Decision-Making in Nebraska

1. ORGANIZING DOCUMENTS
   

   Locate, review and revise, if necessary:

   • Insurance policies
   • Deeds to real estate
   • Certificates of deposit
   • Stocks and mutual funds
   • Wills
     • No legal authority during a person's lifetime
     • Property is distributed after death
   • Government benefits
     • Medicaid or SSI eligibility
     • VA benefits
2. NON-HEALTH CARE DECISIONS
   
   
   1. Durable Power of Attorney
      
      
      1. Definition:
         A power of attorney is an instrument in writing by which one person, as principal, appoints another as his agent and confers upon him the authority to perform certain specified acts or kinds of acts.

         "Durable" language is that language showing the intent of the principal that the authority conferred shall be exercisable notwithstanding the principal's subsequent disability or incapacity.

      2. Statutory Authority:
         Uniform Durable Power of Attorney Act, Sections 30-2664 to 30-2672. Nebraska Short Form Act, Sections 49-1501 to 49-1561
         
      3. Scope of Authority:
         The authority given to the agent, known as the "attorney-in-fact," may be for a limited purpose such as depositing checks and paying bills, or the authority may be general which would allow the person to do almost everything the principal could do if acting on his own behalf.
         
         NOTE: Gifting is NOT allowed unless power is specifically granted.
         
      4. Revocation:
         A power of attorney may be revoked at any time, as long as the principal remains competent, by simply notifying the attorney-in-fact in writing.
         
         Death of the principal acts as revocation as soon as the attorney-in-fact receives notice of the death.
         
         
         
   2. Guardianship
      
      
      1. Definition:
         The appointment by the court of an individual, known as a guardian, to assume decision-making and handle the affairs of an individual, known as the ward, whom the court has found to be incompetent or incapacitated.
         
      2. Procedure:
         Nebraska Revised Statutes, Sections 30-2617 to 30-2629.
         
         
         1. File petition in your county court
            
         2. Written notice served by the sheriff
            
         3. Guardian appointed
            
         4. Hearing
            
         5. Letter of guardianship issued by the court
            
            
      3. Scope of Authority:
         
         1. Selecting abode
            
         2. Arranging for medical care
            
         3. Protecting personal effects
            
         4. Giving necessary consent, approval or release
            
         5. Arranging for training, education or other rehabilitating services
            
         6. Applying for private or government benefits
            
         7. Instituting proceedings to compel support, if no conservator
            
         8. Entering into contractual arrangements, if no conservator
            
         9. Receiving money for expenses, if no conservator
            
            
   3. Conservatorship

   1. Definition:
      The appointment by the court of an individual, known as a conservator, to assume management of property and financial affairs of a person whom the court has found to be unable to manage his or her property and property affairs effectively for reasons such as mental illness, mental deficiency, physical illness or disability, chronic use of drugs, chronic intoxication, confinement, or lack of discretion in managing benefits received from public funds…AND that person has property which will be wasted or dissipated unless proper management is provided.
      
      
   2. Procedure:
      Nebraska Revised Statutes, Sections 30-2630 to 30-2643.
      
      
      1. File petition in your county court
         
      2. Written notice served by the sheriff
         
      3. Hearing
      
      
   3. Scope of Authority:
      The court has all the powers over the estate and affairs which the protected person could exercise if present and not under disability, except the power to make or alter an estate plan. Including the power to:

   1. Make gifts (only after hearing and notice)
      
   2. Convey or release interests in property (only after hearing and notice)
      
   3. Exercise or release powers as trustee
      
   4. Enter into contracts
      
   5. Create revocable or irrevocable trusts (only after hearing and notice)
      
   6. Exercise options to purchase securities or other property
      
   7. Elect options and change beneficiaries under insurance (only after hearing and notice).
      
      

3. HEALTH CARE DECISIONS
   
   
   1. Health Care Power of Attorney
      
      
      1. Definition:
         A health care power of attorney is a document which appoints an individual to make health care decisions on behalf of the principal should that individual become unable to do so.
         
         In Nebraska, the Health Care Power of Attorney Act, Sections 30-3401 to 30-3432, provides the framework for these documents.
         
         
      2. Execution:
         
         1. Must be in writing
            
         2. Identify the principal, attorney-in-fact, and successor
            
         3. Specifically authorize health care decisions
            
         4. Include date of execution
            
         5. Signed by two witnesses and notary public
         
         
      3. Scope of Authority:
         The attorney-in-fact has no authority to withhold or withdraw consent to routine care necessary to maintain patient comfort or the usual and typical provisions of nutrition and hydration. The attorney-in-fact shall not have the authority to consent to the withholding or withdrawing of a life-sustaining procedure or artificially administered nutrition or hydration unless explicitly authorized by the document.
         
      4. How It Becomes Operative:
         
         1. Incapacity - defined as the inability to understand and appreciate the nature and consequences of health care decisions, including the benefits of, risks of, and alternatives to any proposed health care or the inability to communicate in any manner an informed health care decision.
            
         2. The attending physician and any consulting physician make the determination of incapacity in writing.
            
         3. The document remains in effect until the principal dies, until revoked, or until the attorney-in-fact withdraws. A decision made by the attorney-in-fact may be revoked at any time by a principal who is competent and in any manner by which the principal is able to communicate intent to revoke.
      
      
      
   2. Living Will
      
      
      1. Definition:
         A living will is simply a written declaration regarding an individual's wishes if life-sustaining medical treatment should become necessary. In Nebraska, the Rights of the Terminally Ill Act, Sections 20-401 to 20-416, gives the framework for living wills.
         
         
      2. Execution:
         
         1. Must be an adult of sound mind
            
         2. Signed in the presence of two witnesses and notary public
         
         
         
      3. How It Becomes Operative:
         1. Communicated to the attending physician
            
         2. Declarant determined to be terminal or PVS (persistent vegetative state)
            
         3. Physician determines declarant unable to make decisions
            
         4. Notification of intent to invoke Living Will
            
         5. May revoke at any time and in any manner

      
      

   3. Advance Directives - Federal Involvement
      Under federal law, health care providers such as hospitals and nursing homes are required to inform all patients of their right to execute an "advance directive" such as a Living Will or HCPA (Healthcare Power of Attorney). There is NO requirement under the law that each patient actually executes such a directive.
      
      

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

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To Tell or Not To Tell? A Very Important Question

As I travel across our six-county area presenting educational programs and visiting support groups, I am often made aware that many caregivers I meet have not shared their situation with neighbors, friends or even family. There seems to be a reluctance to reveal a diagnosis of Alzheimer's, or any other form of dementia. I can understand this reluctance because there is a need to protect those whom we love. If, for example, my husband is becoming quick-tempered and suspicious because of the damage to his brain from Alzheimer's disease, I do not want my close neighbors to see this behavior. I am embarrassed for him. This feeling is understandable.

However, there could be advantages to informing family members and close friends. Here are some important reasons to make others aware.

• Educating family and friends about the disease may help them feel more comfortable around the person. Personality and mood changes will be easier to handle if others understand why they are happening. Educate others to help them understand that it is the disease, not the person who is causing the changes.
  
• Educating family and friends may help them feel more comfortable with what you are dealing with. Friends might attend a support group meeting with you or read educational materials you might have. As a caregiver, you have now opened up the possibility of additional people with whom to share your feelings. No one should face this disease alone.
  
• Sensitizing others has a ripple effect. As we educate and allow people to understand the symptoms of this disease, there is a greater chance the disease will be recognized in its earlier stages.
  
• Sharing with those around us de-stigmatizes the disease. The earlier the detection, the more beneficial some of the new medications can be. It is also best to address planning, safety and financial issues as early as possible. Alzheimer's is a medical condition, not a psychological/emotional disorder or a contagious virus.
  
• Explaining the responsibility of caregiving and how it has affected your life will help others have a better sense of how they can help. Don't hesitate to ask family for support. Have several tasks in mind for people to do. Involving others in caregiving will help them better understand your situation and why you've made certain decisions.
  
• Talking with children and teenagers in the family can also help. Young children are often able to relate to a person who has limited verbal ability. Teenagers and young adults feel valued if they're offered an opportunity to spend time with the person or share some of your responsibilities.

For more information on how to make others aware, the chapter office has a pamphlet entitled "You Can Make a Difference: 10 Ways to Help an Alzheimer Family." There is also a handout from the Just the Facts collection entitled "Telling the Patient, Family and Friends."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Two Primary Needs of Caregivers

1. Information
   
   1. Alzheimer's Disease (AD) Process
      1. Symptoms, behaviors, stages, etc.
      2. Why AD (Alzheimer's disease) patients behave as they do. Why they wander, hide possessions, etc.
      3. Respite care. What is it? Why caregiver needs it. Adult daycare centers.
         
   2. Legal
      1. Durable Power-of-Attorney for financial and medical.
      2. See elder law attorney for legal advice.
         
   3. Financial
      1. Spousal Impoverishment Act of 1989. (Call local Area Agency on Aging office.)
      2. Waivers of income for help with aged in the home. (Call local Area Agency on Aging office.)
         
   4. Technical
      1. Techniques for successful home management of AD (Alzheimer's disease) patient.
      2. Triggering, cueing, distractions, etc.
      3. Brochures on problem solving and creativity.
      4. Dealing with incontinence.
      5. Dealing with hostility and aggressiveness.
         
   5. Home modifications
      1. How to use gates, locks, alarms, water shut-off valves, barriers, etc.
         
   6. Clothing modifications
      1. Use of Velcro® in clothing, etc.
         
   7. Assistive technology
      1. Availability of wheelchairs, hospital beds, patient lifts, etc. (Call State Vocational Rehabilitation for catalog showing items.)
         
   8. Nursing Home
      1. Contact State Department on Aging for check lists, evaluations and ombudsman
         
2. Counseling
   Personal counseling with mental health professional for:

1. Developing caregiver's plan for survival.
2. Management of anger and other negative emotions, (such as fear, self-pity, guilt, blame, shame, grief, etc.)
3. Refocusing and reconstructing caregiver's life for greater self-fulfillment.
4. Learning how to find the humor, joy, and love in the AD (Alzheimer's Disease) journey.
   

Source: Lela Knox Shanks, 1994.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Understanding Legal Documents and Terms

Commonly used documents in legal planning for individuals with Alzheimer's Disease include:

Power of Attorney
A power of attorney document gives a person with Alzheimer's Disease (the principal) an opportunity to authorize an agent (usually a trusted family member or friend), to legally make decisions when he/she is no longer competent. Most powers of attorney are "durable," meaning that they are valid even after the principal is no longer competent. A power of attorney can be changed, withdrawn at any time, and does not give the agent authority to override the decision-making of the principal.

Durable Power of Attorney for Health Care
A durable power of attorney for health care document appoints an agent to make all decisions regarding health care, including choices regarding health care providers, medical treatment and facilities. For persons in the later stages of Alzheimer's Disease (AD), the health care agent will choose care services and make end of life decisions, such as whether or not the person with AD (Alzheimer's disease) is given artificial nutrition or issues "do not resuscitate" (DNR) directives.

Living Will
In a living will, the person with Alzheimer's Disease expresses his/her decision on the use of artificial life support systems. It is useful only in situations where a physician has determined that the person is irreversibly ill or critically injured and near death.

Living Trusts
Trusts created by an individual, with legal capacity, during his/her lifetime are known as "living" trusts. A living trust is another way to ensure the management of property. The person with Alzheimer's Disease, the grantor, also known as the trustor, creates the trust and appoints him/herself or someone else as trustee. A trustee, usually an individual or bank, has the responsibility to carefully invest and mange trust assets. The living trust provides that once the grantor, who is also acting as the trustee, is no longer able to manage finances because of cognitive impairment, another person is appointed as trustee.

Will
A will is a document created by an individual that names an executor - the person who will manage the estate - and the beneficiaries - the person or persons who will receive the estate - at the time of death. Wills are effective only when the individual who created and executed the will dies.

Guardianship/Conservatorship
A caregiver of an individual who no longer has legal capacity to execute powers of attorney or trust may have to become that individual's guardian or conservator. A guardian has the legal authority to make decisions regarding the care and custody of the person with Alzheimer's Disease. In some states, the guardian who manages assets is known as a conservator.

Glossary of Legal Terms
Agent	The individual authorized to make legal decisions for the principal, usually a trusted family member or friend.
Beneficiaries	The individuals named in a will who receive the estate upon the death of the will maker.
Conservator	The individual who manages another individual's assets and financial matters.
Executor	The individual named in a will who manages the estate of a deceased individual.
Grantor/Trustor	The creator of the living trust.
Guardian	An individual, appointed by the courts, authorized to make legal and health care decisions for another individual.
Principal	The individual signing the power of attorney to authorize another individual to legally make decisions for him/her.
Trustee	The individual or bank who manages the assets of the living trust.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Activities of Daily Living (ADLs)

and Instrumental Activities of Daily Living (IADLs) Issues and Tools of Measurement ; Determinants of those needing assisted living:

Performance of

• • Instrumental Activities of Daily Living (IADLs)
  • Activities of Daily Living (ADLs)
    
• Cognitive status
  • Orientation, registration, attention and calculation, recall, language, judgment, and reasoning.
    
• Mental and behavioral status
  
• Physical health and medical status

Issues in the performance of ADLs (Activities of Daily Living) and IADLs (Instrumental Activities of Daily Living):

• Is activity done
  • At the appropriate time?
  • At the appropriate place?
  • In the appropriate manner?
    
• Time required for the activity
  
• Difficulty with the performance of the activity
  
• Changes in function over short periods of time.
  
  

Reasons for difficulties with ADLs and IADLs:

• Physical impairments/problems
  • Reduced Range of Motion (ROM), stiffness, tremors, reduced sensation
  • Pain/discomfort
  • SOB (shortness of breath), weakness, lack of endurance
  • Gait/balance problems
  • Sensory impairments
  • Eating/Chewing problems
    
• Cognitive limitations
  • Memory
  • Reasoning ability
  • Judgment
• Emotional and behavioral factors
  • Fear, uncertainty, lack of confidence
  • Depression
  • Anxiety

Contextual factors in ADL and IADL function:

• Personal preferences/decisions
  • Motivation
  • "Learned dependency"
  • Cultural factors
    
• Family dynamics
  
• Environmental fit
  • Barriers to accessibility
  • Features that increase risks
  • Lack of assistive technology
    

Tools for measuring physical function:

• Katz Index of ADL (Activities of Daily Living)
  • Specifies some components of activity, but they are aggregated
  • Only indicates whether elder receives assistance - not the amount needed
  • Uses hierarchy to determine level of dependence
  • Good for predictive ability, not applicable for determining needed services
    
• Functional Independence Measure (FIM)
  
  • Considers:
    • Time to accomplish activity
    • Need for assistive device
    • Need for cueing/coaxing
    • Approximate amount of activity person can do
  • Does not consider
    • Context - home, hospital, structured environment
    • Resistance - in cognitively impaired

Cognitive assessment tools:

• Mini-Mental State Examination (MMS)
  
  • Advantages:
    • Relatively short
    • Well tested
    • Samples the domain of cognitive function relatively well (except for judgment)
  • Disadvantages:
    • Educational level may have effect
    • Vision or upper extremity disabilities may interfere (drawing and writing)

 

Problems with Measurement Tools:

• Fail to measure interactions among various domains:
  
  • Examine only physical function or amount of assistance needed, not
    • Cognitive factors
    • Social or cultural factor
    • Contextual factors (environmental barriers)
  • Examine only cognitive, mood, or behavior status and do not link to physical function
    

Implications of limitations in tools:

• Good interviewing skills are critical.
  
• Acute observational skills are imperative.
  
• Professional judgment is absolutely necessary.

Source: Dr. Linda Redford, Center on Aging, Kansas University Medical Center, at "Assisted Living Skills Training" sponsored by Nebraska Department of Health and Human Services, January 20, 1999.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Assisted Living Fact Sheet

What is Assisted Living?

• A residential setting
• Promotes aging in place
• Supportive, health-related services
• Available 24-hours a day to meet unscheduled needs

Philosophy of Assisted Living

• Helps people maintain their optimal autonomy and independence
• Family-like environment
• Homelike environment (such as personal furniture, privacy)
• Strives to provide services in the way people are accustomed to

Assisted Living serves people who

• Need help with housekeeping chores, meal preparation, bathing, dressing, or taking medications
• Require some health care assistance or monitoring
• Need transportation and mobility assistance or monitoring
• Have periods of confusion or memory problems

Services provided

• Skilled nursing - nurse delegation from own staff or outside staff
• Meals Assistance with personal care activities
• Help with medications
• Transportation
• Shopping
• Housekeeping
• Laundry

Characteristics to observe in Assisted Living Facilities

• Staffing - inside or outside providers
• Numbers per resident - staff ratios
• Availability of licensed personnel - RN (registered nurse), LPN (license practical nurse)
• Level of training of aides - certified medication aides
• Supervisors of staff - licensed administrators

Staffing requirements for Assisted Living

• Facility shall maintain a sufficient number of staff with the required training and skills necessary to meet the resident population's requirements for assistance or provision of personal care, ADL's (activities of daily living), health maintenance, supervision and other supportive services.
• Facility shall have at least one staff person on the premises at all times when necessary to meet the needs of the residents.

Medication administration includes, but is not limited to:

• Providing medications to another person according to the "Five Rights."
  • The right resident, the right drug, the right dosage, the right route, and the right time.
• Recording medication provision.
• Observing, monitoring, reporting and otherwise taking appropriate actions regarding desired effects, side effects, interactions, and contraindications associated with the medication.

Resident Service Agreements

• Service plans and assessment must be very specific.
• Services must reflect the findings of the assessment.
• Services are congruent with those offered by the facility.
• Level of care must be specified. (Is the level of care beyond the facility's ability?)

Observations related to Assisted Living services

• Condition of residents
  
  • Clothing
    • Cleanliness
    • Fit
    • Appropriate to temperature - elderly tend to wear more clothing for warmth
  • Appearance
    • Hair cleaned and combed
    • Nails cleaned and trimmed
    • Skin - general condition
      • Dryness - alleviated by proper humidification in heating system
      • Lesions - possible diabetes, may lead to infection
      • Rash
      • "Bagginess" - possible weight loss
      • Bruises, cuts - note location, stage, pattern to determine abuse, neglect, or falling
• Behavior of Residents
  • General demeanor
    • Smiling, laughing appropriately or sad, crying
    • Eye contact - may be cultural issue
    • Communication pattern
  • General comments
    • Pleased with care, food choices, privacy, staff, etc.
      
• Recognizes and likes staff - calls them by name
  • Staff
  • Ratio of staff to residents is adequate to meet needs.
  • Appropriately trained staff are available to meet resident service needs.
  • Appropriate levels and numbers of staff are available at all times they may be needed.
  • Residents are receiving services from properly trained staff.
  • Appearance of staff
  • Visibility of staff in facility - Are staff clustered together, rather than with residents?
  • Responsiveness of staff to residents' calls.
  • Staff familiarity with residents
  • Manner in which staff address residents.
  • Manner in which staff discuss residents, especially "difficult" ones.
    
• Condition of facility
  • Cleanliness, lack of clutter, lack of odors
  • Safety
  • Environment appropriate to needs of residents
  • Amenities available - telephone, assistive devices
  • Privacy available for resident
  • Homelike atmosphere (unless there are issues of safety)
    • Facility pets
    • Common Areas - set up to facilitate socialization, warm and comfortable
      

Source: Dr. Linda Redford, Center on Aging, Kansas University Medical Center, at "Assisted Living Skills Training" sponsored by Nebraska Department of Health and Human Services, January 20, 1999.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Can an AD (Alzheimer's disease) Person Live Alone?

By Diana Wilson, M.A., Family Resources Coordinator, Alzheimer's Association. Courtesy of St. Louis Chapter.
Living day to day with Alzheimer's Disease requires a delicate balance between a person's independence and his or her safety. This balance is difficult to maintain when the AD (Alzheimer's Disease) person lives alone, and you, the caregiver, have to monitor the safety of this living arrangement.

Before making a change, caregivers need to first evaluate how well the AD (Alzheimer's Disease) individual handles daily tasks. It is important to directly observe the person performing these routine activities. Do not rely on the person's report, because it may not truly reflect the problem at hand.

Use the following questions to help determine how well the AD (Alzheimer's Disease) person is functioning independently and to identify safety concerns. One or more "Yes" answers in a category may indicate a need for more supervision, support or a change in living arrangements.


Safety Concerns

Does your loved one:

• Have driving accidents, even minor ones? [ ] Yes [ ] No
  
• Get lost driving or walking? [ ] Yes [ ] No
  
• Burn pots on stove or forget to turn off burners or oven? [ ] Yes [ ] No
  
• Forget to extinguish cigarettes? [ ] Yes [ ] No
  
• Let strangers into the house or lock herself out often? [ ] Yes [ ] No
  
• Forget to secure the house at night or when going out? [ ] Yes [ ] No
  
• Demonstrate mood swings and suspicious or paranoid behaviors? [ ] Yes [ ] No
  
  

Personal Care

Is the person unable to:

• Eat well-balanced meals and drink plenty of liquids? [ ] Yes [ ] No
  
• Bathe and dress properly? [ ] Yes [ ] No
  
• Use the bathroom when needed? [ ] Yes [ ] No

Other Tasks

Is the person unable to:

• Keep up with housekeeping duties and home repairs? [ ] Yes [ ] No
  
• Pay bills on time, balance checkbook and use credit cards? [ ] Yes [ ] No
  
• Shop for, store and cook food correctly? [ ] Yes [ ] No
  
• Use the phone, handle an answering machine and remember important
  phone numbers? [ ] Yes [ ] No
  
• Take medication on time and in the right amount? [ ] Yes [ ] No

If your AD (Alzheimer's Disease) loved one passes the test in all three categories, remember to reevaluate on a frequent and regular basis. Any sudden changes in ability could indicate a potential health problem. Consult a health professional when necessary. If your loved one is having difficulty in one or more of these categories, it is time to consider making some changes to ensure safety. For more information on options available to you, please contact us at one of the phone numbers listed below. Together, we can discuss your situation and help determine what changes will be most beneficial to you and your loved one.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Care Settings and How They Differ

Categories	Common Names	Regulation	Staffing (24-hour awake)	Daily Needs Assistance	Activity Program	Medication Assistance	Funding
HOUSING ONLY	Retirement Housing Senior Apartments SeniorLiving	State: Usually fire codes only	Usually do not have 24-hour staff on site	Usually no meals provided May be able to pay privately to have someone come in and assist	Usually no organized activities	Usually no assistance provided	Private Funds
ROOM, BOARD AND MINIMAL ASSISTANCE	Assisted Living Board and Care Group Home Community Based Residential Facility Foster Home	State: Varies greatly from state to state Some will have fire code only, others regulate programs and services	May or may not have 24-hour awake staff	1 to 3 meals provided Varied amount of care assistance available	Some structured activities	May have assistance available	Private Funds (most common) Private Insurance Medicaid Waivers (Not available in all states)
24-HOUR CARE WITH SKILLED NURSING SERVICES	Skilled Nursing Facility Nursing Home Health and Rehabilitation Center Health Care Center Hospice	State and/or Federal: Regulations for all aspects (staffing numbers and qualifications, environment, activity programs, etc.)	Have 24-hour awake staff (usually offer 24-hour skilled care, too)	3 meals provided daily Full assistance with care (when needed)	Have structured activity program (Amounts and types vary)	Assistance provided	Private Funds Medicaid Private Insurance Medicare (limited)

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Dementia Care Complaints and Concerns

• Dementia in nursing facility residents is not carefully or accurately diagnosed, and sometimes is not diagnosed at all.
  
• Acute and chronic illnesses, depression, and sensory impairments that can exacerbate cognitive impairment in an individual with dementia frequently are not diagnosed or treated.
  
• There is a pervasive, general feeling among nursing facility administrators and staff that nothing can be done for dementia residents.
  
• Nursing facility staff members frequently are not knowledgeable about dementia or effective methods of caring for residents with dementia. They generally are not aware of effective methods of responding to behavioral symptoms in dementia residents.
  
• Psychotropic medications are used inappropriately for residents with dementia, particularly to control behavioral symptoms.
  
• Physical restraints are used inappropriately for residents with dementia, particularly to control behavioral symptoms.
  
• The basic needs of residents with dementia (such as hunger, thirst, and pain relief) may not be met because the individuals cannot identify or communicate their needs, and nursing facility staff members may not anticipate the needs.
  
• The level of stimulation and noise in many nursing facilities is confusing for dementia residents.
  
• Nursing facilities generally do not provide activities that are appropriate for residents with dementia.
  
• Nursing facilities generally do not provide enough exercise and physical movement to meet the needs of dementia residents.
  
• Nursing facilities do not provide enough continuity in staff and daily routines to meet the needs of residents with dementia.
  
• Nursing facility staff members do not have enough time or flexibility to respond to the individual needs of dementia residents.
  
• Nursing home staff members encourage dependency in residents with dementia by performing personal care functions, such as bathing and dressing, for them instead of allowing and assisting the residents to perform these functions themselves.
  
• The physical environment of most nursing facilities is too "institutional" and not "homelike" enough for residents with dementia.
  
• Most nursing facilities do not provide cues to help residents find their way.
  
• Most nursing facilities do not provide appropriate space for residents to wander.
  
• Most nursing facilities do not make use of design features that could support residents' independent functioning.
  
• The needs of families of residents with dementia are not met in many nursing facilities.

Source: Office of Technology Assessment, 1992.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Selecting a Dementia Care Unit

When selecting a dementia care unit, remember:

• The primary goal of a dedicated dementia care unit is to help the patient achieve the best possible quality of life.
  
• Care should be patient-centered, and offer residents
  • Safety
  • Security
  • Medical care
  • Emotional support
  • Reasonable privacy
  • Access to appropriate activities
  • Assistance with the activities of daily living

• The state of Nebraska has not established uniform guidelines for dementia units. However, Nebraska does have a statute relating to the Alzheimer's Special Care Disclosure Act. Any facility which offers to provide care for persons with dementia/AD must disclose "the form of care or treatment provided that distinguishes such form as being especially applicable to or suitable for such persons." This disclosure is filed at the Department of Health and Human Services Regulation and Licensure office and is available for viewing by the public. The disclosed information explains the additional care provided in each of the following areas:
  
  • The special care unit's written statement of its overall philosophy and mission which reflects the needs of residents afflicted with Alzheimer's disease, dementia, or related disorder;
  • The process and criteria for placement in, transfer to, or discharge from the unit;
  • The process used for assessment and establishment of the plan of care and its implementation, including the method by which the plan of care evolves and is responsive to changes in condition;
  • Staff training and continuing education practices;
  • The physical environment and design features appropriate to support the functioning of cognitively impaired adult residents;
  • The frequency and types of resident activities;
  • The involvement of families and the availability of family support programs; and
  • The costs of care and any additional fees.
    
• Families may find substantial differences in the units. In most cases, families have to rely on their own judgment when making their final selection.
  
  

Philosophy and Criteria for Admission to the Unit

One of the first things for a family to decide is if a dedicated special care dementia unit would be right for their loved one. A unit is only "special" if it offers a service that is "special" and needed by their family member. Pre-admission assessments should include the family's input regarding the patient's ability level. Management of difficult behaviors should be possible without the use of restraints. Matters like cost, unit security and medical services available may not seem important now, but will have long range importance to the family.

• How does unit care differ from care in the regular facility?
  (Request written materials from the facility relative to philosophy of care, services provided for dementia patients and cost per day. Ask what this charge includes and are there additional costs?)
  
• Does the unit accept Medicaid?
  
• What is the unit's policy regarding medical and physical restraints?
  (Federal law requires that the facility use the least amount of medical and physical restraints possible to insure the resident's quality of life.)
  
  
• How often does the staff monitor the necessary restraints?
  
• What type of security system is used in the unit?
  
• Are there special policies written for unit residents?
  
• Are medical specialists available to serve residents in the unit?
  (For example, Dentist, Podiatrist, Ophthalmologist, Audiologist.)
  
  
• Are skilled rehabilitation services available for unit residents?
  (For example, Physical, Occupational, Speech, Recreation.)
  
• Can residents' private physicians be retained in the facility?
  (Federal law requires that a resident be seen by a physician every 30 days for the first three months. After this period of time, they must be seen by a physician every 60 days.)
  
• Does the facility do a pre-admission assessment personally or by telephone?

Family Related Area

Residents in a unit need a familiar, secure environment. The value of having personal and treasured items in their rooms is important. The possibility of theft and breakage is present, but the worth of having these items far outweighs the disadvantages. Maintenance of family relationships with the resident and staff should be an important goal of the unit and facility.

• Is the resident allowed personal items to furnish his/her room?
  
• What is the policy on home visits outside the unit?
  
• Is there a policy on family visits within the unit?
  
• Is there a quiet, private area for residents to entertain visitors?

Services of the Facility

Staffing on units varies greatly. There should be enough staff on day and evening shifts so that residents can be assisted to do tasks for themselves rather than have the tasks done for them. Ongoing dementia behavior training is essential to the staff and residents. Activities are vital for a good unit. These activities should support remaining abilities, minimize failure, enhance dignity and enable pleasure. A beautiful environment does not necessarily insure quality care for the resident.

• Is the environment clean (odor free), comfortable, and well lit?
  
• How many people as staff are scheduled on each shift?
  
• How is the staff selected and trained for the unit?
  
• Is there an ongoing training program for staff working on the unit?
  
• Do the residents seem to interact well with the staff?
  
• Does the staff appear to display respect to the residents?
  
• What is the availability of the beauty salon and barber shop for residents?
  
• How often are snacks made available with finger food offered for self-feeding?
  
• Are activity programs personalized to meet the needs of individual residents?
  
• Who plans and carries out the activity programs and what are some examples of personalized actives?
  
• What pharmacy does the nursing facility use?
  
• Are unit residents included in social outings?
  
• Is there a courtyard connected to the unit for the residents and how is it monitored?
  
• Are the residents allowed to go out of the unit to take part in the facility's activities?
  
• Is smoking allowed and is it supervised?

Tips for Families

Selecting a nursing facility for your loved one is a difficult procedure. Below are several tips you might want to consider before the final decision is made.

• Make an appointment for a formal tour of the facility with the unit director.
  
• Return to the facility at a different time of day and make an informal tour.
  
• Consider the location of the facility in relationship to that of the family.
  
• Talk to families with loved ones currently residing in the unit.
  
• Check to see if your private physician will make calls to the facility you select. Find out if all pharmacy costs are billed directly to the family, or included in the monthly facility charges.
  

Telephone numbers to know:

• (402) 471-2306, Nebraska Long-Term Care Ombudsman, advocate for nursing facility residents.
• (402) 595-3356, Nebraska Department of Social Services - answers questions on Medicaid and spousal impoverishment.

Source material: "Selecting a Nursing Home with a Dedicated Dementia Care Unit," by Nancy L. Mace, M.A., and Lisa P. Gwyther, A.C.S.W.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Hospice Fact Sheet

Courtesy of Hospice Care of Nebraska

Hospice Is…

• A philosophy of care dedicated to caring for individuals with life-limiting illness and their family.
  
• Based on the holistic view of addressing palliative (Pain/symptom control) care with regard to physical, spiritual and emotional support.
  
• A care alternative that emphasizes the quality of life.
  
• An opportunity to spend as much remaining time in the comfort of home as possible, realizing the benefits and limitations to home care.
  
• A chance to utilize the approach of an interdisciplinary team for support.
  
• Maintaining the ability to make decisions that allow as much "normalcy" as possible.
  
• A home-centered program regardless where patients live (whether it be home or nursing facility).

How Hospice Works…

• Referrals may come from physicians, nurses, family members or patients themselves.
  
• Hospice care is ordered by and managed by the patient's attending physician.
  
• A plan of care is implemented and centered on support garnered by an interdisciplinary team with the most important member being the patient, with the extent of team involvement being determined by the patient. The interdisciplinary team includes:
  • A nurse visits intermittently to provide skilled assessment and to act as a liaison to the primary physician.
  • A social worker to provide resource information and emotional support.
  • A home health aide to assist with personal care.
  • A minister to provide spiritual care if requested, and is also available as a liaison to the patient's primary minister.
  • A dietitian to assist with nutritional counseling.
  • A pharmacist to provide information concerning medications.
  • A homemaker to assist with light housekeeping tasks.
  • A volunteer coordinator to implement volunteer services including transportation, respite and child care.
  • Therapists who can assess and provide physical, occupational and speech therapy.
  • A program coordinator to provide follow-up to the family unit after the death of the patient.
    

Hospice often draws families together to care for a loved one. It can assist in enhancing a relationship or to assist in preparing families for the "final good-bye."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Qualities Necessary in an Assisted Living Facility

Qualities Necessary in an Assisted Living Facility for Individuals with Alzheimer's Disease and Related Disorders

When a facility says it is "dementia-capable," it is assumed the facility understands the needs of such individuals and can meet the needs of such an individual before it commits to her/his admission. Then retention/discharge issues become easier to deal with because both the facility and the resident (and family) know what the individual's needs are and the capacity of the facility to meet such needs.

The facility should provide:

• A written statement of its mission, policies and procedures, reflecting how the setting can meet the specialized needs of individuals with dementia.
  
• An initial screening of the applicant to determine the setting's ability to meet the anticipated needs of a person with dementia, prior to move-in and/or the execution of a resident agreement.
  
• A more complete assessment of the resident and a written service plan using information from the assessment consistent with the services provided by the facility after move-in.
  
• An individualized service plan developed with the resident as a full partner.
  
• A safe and secure outdoor area for residents that wander.
  
• Available staff to walk with individuals with unsteady gait.
  
• Facility lighting that is even and consistent to help eliminate falls.
  
• Meaningful activities which enhance the individual's positive self-image and sense of fulfillment, as well as allow for the individual's cognitive deficiencies. The activities should be appropriate for an adult and provide a feeling of satisfaction, enjoyment and accomplishment.
  
• Safe floor surfaces and available handrails for support.
  
• Clear paths to all destinations and sufficient cues and landmarks for identification of destinations (especially bathrooms).
  
• A method that allows the resident to identify his/her room to help keep confusion to a minimum.
  
• The opportunity for the resident to bring their personal belongings into the facility.
  
• Access to the secure/safe outdoor area and windows to view the outside environment.
  
• Availability of small private places for the family to meet with the resident.
  
• The opportunity for the family to be involved in the resident's care plan.
  
• Common use areas that are safe with appropriate seating.
  
• The opportunity for the individual to be involved in decision-making as much as it is possible.
  
• Available 24-hour awake staff.
  
• Ongoing training to all appropriate staff on Alzheimer's disease and dementia care (i.e., wandering/egress control, general overview of Alzheimer's disease and related dementias, communication basics, creating a therapeutic environment, activity-focused care and dealing with difficult behaviors.)
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Suggested Criteria for Admission

of an Individual with Alzheimer's Disease or a Related Disorder to an Assisted Living Facility*

1. Before admission to the facility, a total medical assessment of the individual must be completed. This assessment will include a functional checklist of the resident's activities of daily living (ADLs).
   
2. Healthcare and financial durable power of attorney has been established or a conservator and guardian has been appointed for the individual with dementia. Advance medical directives for the individual are also established.
   
3. Individual's every day function is affected by:
   • Short-term memory loss.
   • Disorientation to time, place and date.
   • An increase in poor/decreased judgment and problems with abstract thinking.
   • Unable to handle personal finances that result in making inappropriate financial decisions.
   • Difficulties communicating his/her immediate needs to the proper individuals. (i.e., family members or caregivers).
   • Inappropriate telephone usage which may include continually calling 911 for emergencies that do not exist.
   • The individual suffers from erratic sleep patterns.
   • The individual is wandering and getting lost.
   • The individual is suffering from sundowning (agitation and nervousness at sundown).
     
4. The individual is demonstrating an inability to properly perform activities of daily living (ADLs) independently and assistance is required with more than one (bathing, dressing/grooming, toileting, continence mobility, eating).
   
5. The individual does not have aggressive behaviors or "other" behaviors, which present a risk to the health and safety of the other residents in the facility. The "dementia-capable" facility to which an individual is referred has an appropriately trained staff and environment that can accommodate aggressive behaviors that do not present such risks. (Disruptive behaviors need to be assessed.)
   
6. The individual must be ambulatory. If there is a history of continual falls, this must be noted and the frequency of these falls assessed.
   
7. The individual's medical health is stable and preexisting conditions noted.
   
8. The individual is able to communicate his/her needs to others in an appropriate manner.

*These suggested criteria apply to assisted living facilities that provide dementia-capable and NOT dementia-specific care.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Suggested Criteria for Dismissal

of an Individual with Alzheimer's Disease or Related Disorders from an Assisted Living Facility*

1. A medical condition requiring skilled nursing care. This includes specialized nursing procedures that can not be performed in an assisted living facility.
   • Bedridden for 14 days or more
   • Stage III and IV pressure sores
   • Needs 24-hour skilled care for an extended period
   • A physician's order to move the individual to more skilled care
     
2. Diminished functional abilities that prohibit the individual from living in an assisted living facility at an appropriate level.
   • Unable to initiate activities of daily living (ADLs) without total assistance
     (such as bathing, dressing/grooming, toileting, continence mobility, eating)
   • Thought processing is severely impaired
   • The inability to communicate complicates pre-existing medical conditions
     
3. Behavior symptoms develop that pose a danger to the individual or the welfare of others. The setting has attempted to make a reasonable accommodation without success to address resident behavior in ways that would make move-out or change unnecessary. This should all be documented in the resident's records.
   • Aggressive behaviors and physical and verbal abuse by an individual changes so that they pose a danger to the individuals or others or go beyond the capacity of the facility to make reasonable accommodations and therefore become unmanageable for the facility.
   • The facility institutes plans and staffing to deal with wandering and is no longer capable of accommodating an individual's wandering. As a result, there is danger to the individual and others.
     
4. Pattern of non-compliance of care established.
   

*These suggested criteria apply to assisted living facilities that provide dementia-capable and NOT dementia-specific care.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Training Requirements for Nurses Working with Dementia Patients

As a minimum, training for nurses should include:

• Introduction to aging focusing on both biological and psychological factors. Content should include discussion of normal aging, theories, psychosocial aspects of aging, age-associated losses and reactions to loss, and ethnic/cultural issues.
• Cognitive functioning in the aged. Normal cognitive function should be contrasted with abnormal functioning and progression of the disease process, and physiological changes associated with dementia. Accompanying reasons for corresponding cognitive deficits should be discussed, as should changes associated with reversible and irreversible dementias. Nurses should also be trained in the use, scoring, and interpretation of various assessment tools to measure cognitive function.
  
• Behavior and nursing care problems such as dressing, bathing, and grooming; problems with incontinence, immobility, and eating; and assessment and identification of concomitant diseases and disorders. Nurses should be provided with techniques and interventions regarding behavior problems such as catastrophic behaviors, wandering, withdrawal, depression, nighttime restlessness, agitation, and combativeness.
  
• Use of psychotropic drugs, including an in-depth discussion of types of medications, their appropriate use, and side effects. Nurses should be trained to identify both the need for a particular drug and inappropriate prescribing. Side effects (especially of neuroleptics) should be outlined and alternative therapies discussed.
  
• Environmental restructuring, including the need for structure, consistency, and modified stimuli. Methods for providing a safe and secure environment should be set forth.
  
• Social and emotional aspects of dementia, including the role of the nurse in providing support for the family and the dementia patient. Interventions, community resources, hospice and institutionalization should be discussed, as should possible reactions of the patient and the family members to various care options. Training should include an understanding of how best to obtain information about the social support network and social history of the patient and should provide knowledge regarding ways to facilitate continuity of care among various levels of care (from the home to the hospital or long-term care facility).
  
• Methods for recognizing and preventing excess disability, including the causes of excess disability - fatigue, physical causes (pain, illness), medications, change in environment or caregiver, stressors, sensory impairment, and psychological factors such as depression. Alternatives to the use of physical and chemical restraints should be included.
  
• Methods for training, supervising and evaluating nursing assistants in care of dementia patients.

Source: Advisory Panel on Alzheimer's Disease. Second Report of the Advisory Panel on Alzheimer's Disease: Appendix B. Department of Health and Human Services (DHHS) Publication Number (ADM) 91-1791. Washington, DC: Superintendent of Documents, U.S. Government Printing Office, 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Training Requirements for Nursing Assistants Working with Dementia Patients

All curricula for nursing assistants should include:

• A basic overview of normal and abnormal aging. Content should compare and contrast normal age associated memory changes and abnormal changes associated with dementia and discuss stereotypes and myths of aging and general principles to utilize when working with the elderly.

• Overview of Alzheimer's disease and other dementias, including theories of the cause(s) of ADRD (Alzheimer's disease and related dementias) as well as those related to cure. The pathophysiology and medical diagnosis of ADRD (Alzheimer's disease and related dementias) should be discussed simply and briefly.

• Overview of symptoms of Alzheimer's disease and related dementias and methods to treat these symptoms. Symptoms to be discussed should include, but not be limited to, depression, anxiety, sleeplessness, incontinence, and misinterpretation of external stimuli.

• Management of difficult behaviors through:
  
  • Use of communication skills in dementia patient management. This includes use of short simple sentences, eye contact, physical and verbal cues, and touch. Techniques to assist the aide in handling patient preservation (repetitive requests and actions) should be taught.
  • Prevention of and treatment for catastrophic reactions, agitation, hallucinations, and paranoia. Techniques, such as touch distraction and use of logs to record possible precipitating causes should be provided. The relationship between physical problems and behavioral problems should be noted.
  • Examination of causes of and interventions for care problems such as wandering, eating problems, bathing and grooming problems, and sleep difficulties.
  • Discussion of chemical and physical restraint use, including detrimental effects of both types of restraints and the need to develop more humane nursing interventions. Detrimental effects of physical restraints include psychological trauma, restlessness, dependency in ambulation, and potential for injury. Detrimental effects of chemical restraints include increased falling, extrapyramidal and anticholinergic reactions, tardive dyskinesia, and sedation as well as the tendency of caregivers to neglect the needs of a chemically sedated patient.

• Safety measures. Because of poor judgment, dementia patients may attempt to drink poisons, misuse objects such as knives or scissors, or place themselves in dangerous positions. Nursing assistants working in long-term care facilities should learn of common hazards (such as shampoo, cleaning supplies, silverware) in the facility and learn techniques to alleviate those dangers. Home/health aides must become aware of safety hazards in the home, such as kitchen utensils and stoves, and learn creative ways to eliminate any danger to the patient.

• Prevention and treatment of excess disability, including understanding of the causes of excess disability - fatigue, physical causes (pain, illness), medications, change in environment or caregiver, stressors, sensory impairment, and psychological factors such as depression. Methods to avoid and/or eliminate these factors should be emphasized.

• Emotional and psychological aspects of Alzheimer's disease, including patient and family response to the disorder. Training should cover the losses felt by both patient and family and the distress resultant from those losses.

• Respite care and self-care. Caring for a person with dementia can be emotionally and physically draining, and the nursing assistant must be trained in methods for reducing stress and burnout and dealing with feelings of guilt.

Source: Advisory Panel on Alzheimer's Disease. Second Report of the Advisory Panel on Alzheimer's Disease: Appendix A. Department of Health and Human Services (DHHS) Publication Number (ADM) 91-1791. Washington, DC: Superintendent of Documents., U.S. Government Printing Office, 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Training Requirements for Social Workers Working with Dementia Patients

As a minimum, training for social workers should include:

• An overview of Alzheimer's disease and related dementias, including an overview of normal versus abnormal aging and a description of common problems associated with these diseases.
  
• Common feelings and behaviors experienced by the dementia patient. An in-depth discussion of interventions to manage these feelings and behaviors should be provided.
  
• Common feelings of family members. Methods to support the family including counseling techniques and the development and implementation of support groups should be provided.
  
• Support for family (informal), professional, and paraprofessional dementia patient caregivers, including interventions to manage burnout and the frustration resulting from working with the dementia patient.
  
• An overview of community and financial resources (such as Medicaid and Medicare) available to dementia patients and a discussion of care alternatives - respite care, day care, hospice and institutionalization.
  
• Anticipation of and preparation for legal problems, including wills, trusts, guardianships, conservatorships, and powers of attorney.
  

Source: Advisory Panel on Alzheimer's Disease. Second Report of the Advisory Panel on Alzheimer's Disease: Appendix C. (Department of Health and Human Services (DHHS) Publication Number (ADM) 91-1791. Washington, DC: Superintendent of Documents, U.S. Government Printing Office, 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Brain Autopsy Guide

Reasons families request brain autopsies

Confirmation of diagnosis
A confirmed diagnosis provides families with vital medical information and may be valuable to future generations. This important data enhances a family's medical history and may be necessary for family members to participate in research studies.

Research Advancement
The deceased person may have participated in a research study aimed at finding the causes of Alzheimer's disease. Granting permission for brain autopsy may have been a condition for participation in a research program.

Accurate reporting
It is possible that the number of those afflicted with Alzheimer's Disease is underestimated. that Alzheimer's disease be listed on the death certificate as the underlying cause of death helps the local Board of Health maintain accurate records.

Questions families may ask

Question: Will brain autopsy cause disfigurement?

Answer: There should be no apparent marks to the body as the result of a brain autopsy. The autopsy should not interfere with the family's request for an open casket.

Question: Will the funeral arrangements be delayed?

Answer: When arranged prior to the individual's death, brain autopsy generally does not delay funeral arrangements.

Answer: Families will usually receive a written report about 6 to 12 months after the autopsy has been performed. However, in some areas it may take longer.

Question: What are the costs involved?

Answer: The cost of brain autopsy varies in different areas depending on the resources available.

Question. Can the organs of my loved one be donated?

Answer: Because the causes of Alzheimer's disease are unknown, the Alzheimer's Association does not recommend donating any body organs for transplant purposes.

 

Ways funeral directors can support families

When the necessary pre-arrangements have been made:

• Contact the pathologist or neuropathologist who will perform the autopsy to assist in coordinating the process.
• Assist in obtaining required consent at the time of death.
• Provide transportation for the deceased person to the location where the brain autopsy will be performed and to the funeral home after the brain autopsy is complete.
• Explore the possibility of having the brain removed at the funeral home.

When the necessary pre-arrangements have not been made:

• Assist the family in locating a pathologist or neuropathologist.
• Assist in identifying and securing appropriate consent forms.
• Contact your local Alzheimer's Association Chapter.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Hospice Care Information

Courtesy of Hospice Care of Nebraska

Hospice Admission Criteria:

• Life-limiting illness
• Prognosis of six (6) months or less (if disease follows its normal course)
• Physician must order hospice care
• Individual is not seeking curative treatment
  

Services Provided by Hospice:

• Nurses
• Medical and Social Workers
• Clergy
• Volunteers
• Therapy Services
• Family member bereavement counseling and support
• Education and Inservice Programs
• 24-hour availability
  

Financial Responsibility of Hospice:

• Visits made by hospice staff and volunteers
• Medications
• Supplies
• Medical equipment
• Therapies
• Hospitalizations
• Respite care
• Bereavement counseling service
  

What Does Medicare Cover?

• Physician services
• Nursing care
• Medical appliances and supplies, as appropriate
• Drugs for symptom management and pain relief
• Short term inpatient and respite care
• Homemaker services, home health aides and volunteers
• Physical and other therapies
• Counseling: social work, bereavement and pastoral care

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Job Description for a Hospice Registered Nurse

Courtesy of Hospice Care of Nebraska

JOB CODE: 2604

JOB TITLE: Registered Nurse

REPORTS TO: Patient Care Coordinator

GENERAL PURPOSE: To provide nursing assessment, planning and care to maximize the comfort and health of patients and families in accordance with the interdisciplinary plan of care. Supports the Provider Relations activities of the organization.

ESSENTIAL JOB FUNCTIONS:

PLAN OF CARE:
Duties: Receives patient assignments from the Patient Care Coordinator. Assumes responsibility for a patient/family that includes assessing, planning, implementing and evaluating care. Obtains data on physical, psychological, social and spiritual factors that may influence patient/family health status and incorporate that data into the plan of care.

COMMUNICATING PATIENT CARE:
Duties: Initiates communication with attending physicians, other hospice staff members, and other agencies as needed to coordinate optimal care and use of resources for the patient/family. Maintains regular communication with the Patient Care Coordinator to review care. Maintains regular communication with the attending physician concerning patient/family care. Attends the Hospice Team Meetings and other patient conferences as deemed necessary by the Patient Care Coordinator.

MAINTAINS PATIENT RECORDS:
Duties: Maintains up-to-date patient records so that problems, plans, actions and goals are accurately and clearly stated and changes are reflected as they occur.

COORDINATING PHYSICAL CARE:
Duties: Accepts responsibility for coordinating the physical care of the patient by teaching primary caregivers, volunteers, employed caregivers, or by providing directed care as appropriate.

INSTRUCTIONS FOR CARE:
Duties: Instructs the patient and caregiver:how to administer medication and recognize side-effects; how to perform personal care and oral hygiene; how to assist in lifting, moving, ambulation and exercise; how to prepare for the events preceding death.

FAMILY/PATIENT SUPPORT:
Informs the Patient Care Coordinator of unusual or potentially problematic patient/family issues. Provides appropriate support at time of death. Shares in providing 24-hour seven-days-a-week coverage to patients and families.

HOME HEALTH AIDE:
Duties: Makes home health aide assignments, prepares written instructions for the aide and supervises the aide in the home.

CONTINUING ED:
Duties: Participates in hospice orientation and ongoing education programs.

POLICIES AND REGULATIONS:
Duties: Demonstrates familiarity with policies of the hospice and state(s) and federal regulations pertaining to nursing services.

OTHER DUTIES: Participates on committees, special projects and other related duties as assigned.

PHYSICAL & SENSORY REQUIREMENTS:
(WITH OR WITHOUT MECHANICAL DEVICES)

Mobility, reaching, bending, lifting, talking, fingering, sitting, carrying, standing, grasping, fine hand coordination, ability to hear, ability to read and write, and ability to remain calm under stress.

QUALIFICATIONS:

• Registered nurse currently licensed in the state(s).
• Previous experience in hospice, home health, geriatrics or general medical/surgical nursing.
• Demonstrated commitment to hospice philosophy of care.
• Must be able to relate professionally and positively to corporate staff and to work cooperatively with other associates at all levels.
• Must have 24-hour access to a motor vehicle and maintain personal auto liability insurance coverage.
• Must have a current driver's license.
• Must be capable of maintaining regular attendance.
• Must meet all local health regulations, pass post-offer drug test, and pass post-employment physical exam, if required.
• Must be capable of performing the essential job functions of this job, with or without reasonable accommodations.

JOB DESCRIPTION REVIEW: I understand this job description and its requirements and that I am expected to complete all duties as assigned. I understand the job functions may be altered from time to time.

I have noted below any accommodations that are required to enable me to perform these duties. I have also noted below any job responsibilities or functions which I am unable to perform, with or without accommodation.


____________________
Associate's Signature Date

_________________________________ ____________________
Supervisor or Orientation Leader Signature Date

cc: Personnel File
Individual Associate


Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Medicare Hospice Benefits

Courtesy of Hospice Care of Nebraska

Hospice services are covered 100 percent under the Medicare Hospice Benefit. The Hospice Medicare Benefit is provided under Medicare Part A. To receive the Hospice Medicare Benefit under Medicare Part A, the patient has to elect the Hospice Benefit and waive the traditional Medicare Part A Hospital Benefit. Medicare will continue to make payment for physician service if the attending physician is not a hospice employee. Medicare will also continue to cover services or conditions unrelated to the life-limiting illness.

Coverage under the Medicare Hospice benefit is broken into benefit periods:

• Benefit Period ONE--90 days
• Benefit Period TWO--90 days
• Additional Unlimited 60-day period

The Medicare Hospice Benefit can be revoked at any time by completing a revocation statement received from the Hospice office. Traditional Medicare Part A Hospital coverage is reinstated at that time. If the Medicare Hospice Benefit is revoked in the middle of a benefit period, the patient loses the remaining days in the benefit period. For example, if a patient revokes the Medicare Hospice Benefit after the first 10 days, the patient gives up the remaining 80 days in the first benefit period. The patient would then have the second period and additional unlimited 60-day periods.

*NOTE: Patient admissions and patient services are provided by Hospice Care of Nebraska without regard to race, color, national origin, disability, age, marital status, diagnosis, communicable disease, religion, gender, sexual orientation, or resuscitation status.

The Hospice Medicare Benefit pays 100 percent for:

• Medications related to the life-limiting illness
• Durable medical equipment (hospital beds, walkers, commodes, oxygen equipment, etc.) related to the life-limiting illness
• Intermittent visits by a visiting nurse and social worker
• 24-hour on-call nurse and accessibility of interdisciplinary team members
• Home health aide for bathing and a homemaker for light housekeeping
• Physical, speech and occupational therapists
• Hospice chaplain
• Dietitian for nutritional consultation
• Volunteers for respite, companionship, etc.
• Inpatient Respite--up to five days of inpatient care provided in an inpatient facility authorized by the Hospice Care of Nebraska
• Continuous Care--provided in the patient’s home on a 24-hour basis for the specific purpose of controlling acute medical symptoms. The goal of the care is to provide support to the patient/family in order to maintain the patient at home.
• Inpatient care for symptom control related to the life-limiting illness. This applies to symptoms that are not controlled and need a highly skilled approach to regain a level of comfort for the patient. Inpatient care is provided in contracted facilities only.
• The Hospice Medicare Benefit does NOT include a 24-hour caregiver.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Progressive Changes in the Terminal Phase/Hospice Plan of Care - Charts

Important things to remember about the following information:

• Progressive changes during the terminal phases in the physical and psychosocial condition varies with each patient.

• The Hospice Team includes the following people, each having specific duties: the medical director, registered nurse, case manager, home health aides, social service workers, chaplain, volunteers.

• All care is coordinated and integrated with the staff of a skilled nursing facility if the patient becomes a resident of a skilled nursing facility anytime during this period.

Month 6

Progressive Changes:	Generally patient is ambulatory and coherent Some side effects from curative measures and/or medications Initial stages of grief, anger and denial
Medical Director:	Initial examination of patient Certification for hospice care Develop plan of care Orders
RN Case Manager:	Assessment for hospice conference with family Confer with physician Develop plan of care Order medications Order DME (Durable Medical Equipment) Train and instruct primary caregiver(s)
Home Health Aides:	Start person care program Instruct primary caregiver(s)
Social Service Workers:	Assess patient and family psychosocial/bereavement needs to develop plan of care Establish trusting relationships with patient and family
Chaplain:	Spiritual assessment Confer with other team members for development of plan of care
Volunteers:	Conference with hospice team for direction Learn interests of patient Initial visitations

Month 5

Progressive Changes:	Some weight loss, weakness, symptoms manifested Signs of stress Growing acceptance of terminal state Fear, depression
Medical Director:	Monitor and assess plan of care ICC meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Follow plan of care and direct team members Provide direct care Report observations Establish rapport with patient and family
Home Health Aides:	Establish supportive, loving, trusting relationship with patient and family Provide personal care services as per plan of care
Social Service Workers:	Monitor and implement approved plan of care Determine need for referral to other community resources Identify dysfunctional patient/family problems Make recommendations
Chaplain:	Implement plan of care conference with patient/family who desire spiritual support Assess other needs requiring psychosocial intervention
Volunteers:	Establish supportive, trusting relationship via ongoing visit and contact

Month 4

Progressive Changes:	Continuing weight loss, decreasing appetite Physical manifestation Symptoms more pronounced Grief work, planning, and resolving
Medical Director:	Monitor and assess plan of care ICC Meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor ongoing implementation of approved plan of care Increased need for symptom management and pain control Evaluate psychosocial needs of family and patient with other team members
Home Health Aides:	Assist with personal care needs Identify and report special needs to Case Manager
Social Service Workers:	Continued monitoring of plan of care Ongoing assessment of patient/family abilities to cope with terminal diagnosis and its impact on daily living
Chaplain:	Implement plan of care as appropriate Contact spiritual support person of denomination of patient/family choice
Volunteers:	Assist with letter writing, telephoning, reading, music Provide emotional support to patient and family Respite for family

Month 3

Progressive Changes:	Physical deterioration apparent Symptomatology and pain increase Beginning of withdrawal Acceptance of terminal disease
Medical Director:	Reassessment for new benefit period Monitor and assess plan of care ICC meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor ongoing implementation of approved plan of care Increasing need for order changes to manage symptoms and control pain Continued coordination of patient, family and team
Home Health Aides:	Continued assistance with personal care needs Identify and report special needs to Case Manager
Social Service Workers:	Evaluate patient/family coping abilities and assess appropriateness of respite care Assess need for referral to other community resources
Chaplain:	Implement plan of care as appropriate Encourage family to continue observance and rituals that provide meaning and support to them
Volunteers:	Arrange for personal preferences of patient: food, visitation, special interests Respite for family

Month 2

Progressive Changes:	Progressive physical deterioration Symptoms increase Pain management primary May be bedridden Increasing withdrawal Resolution and closure
Medical Director:	Monitor and assess plan of care ICC Meeting Orders Evaluate symptoms Manage pain
RN Case Manager:	Monitor more closely Increase visits, as needed Implementation of approved plan of care Daily review of symptom management and pain control Increase family support Coordination of psychosocial plan of care
Home Health Aides:	Provide bathing, dressing and other personal care needs, as necessary Provide comfort measures Report needs to Case Manager
Social Service Workers:	Continued monitoring of approved plan of care Assess patient and family for signs of dysfunctional grieving and provide appropriate intervention Facilitate support systems
Chaplain:	Implement plan of care Provide spiritual support as appropriate to patient and family wishes Assist with final arrangements as requested
Volunteers:	Provide respite periods for family Assist with visitation and personal needs

Final Month

Progressive Changes:	End-stage - pronounced withdrawal Requires total care Intensive management of symptoms and pain No appetite
Medical Director:	Monitor and assess plan of care ICC Meeting Increased need for medication changes to manage symptoms and control pain Support family
RN Case Manager:	Daily monitoring of end-stage process Monitor side effects of medications, symptoms manifested and pain management Coordinate preparation for death with other team members Increase patient/family support
Home Health Aides:	Increase contact with patient and family for direct care Assure all personal care needs are met Provide comfort measures
Social Service Workers:	Continued monitoring of approved plan of care Assist patient and family in resolution and closure Ensure final arrangements Facilitate support systems
Chaplain:	Implement plan of care Provide support to patient and family, as well as hospice staff in preparing for separation Assist with final arrangements as requested
Volunteers:	Provide respite periods for family Provide patient with emotional support

After Death

Medical Director:	May have further communication with the family
RN Case Manager:	Call and/or visit family Assess special bereavement needs May attend funeral Complete discharge charting
Home Health Aides:	May attend funeral
Social Service Workers:	Call and/or visit family May attend funeral Begin bereavement follow-up Identify dysfunctional grieving and initiate appropriate intervention
Chaplain:	May visit family Instruct family regarding bereavement groups and memorial service Provide grief/bereavement support
Volunteers:	Provide bereavement support to family and significant others Maintain regular contact for up to 12 months

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Typical Responses During Grief

Courtesy of Hospice Care of Nebraska

Physical Sensations:

• Tightness in chest
• Over-sensitivity to noise
• Dryness of mouth
• Breathlessness
• Weakness of muscles
• Lack of energy
  

Behaviors:

• Absent-mindedness
• Social withdrawal
• Sleep disturbances
• Restlessness/over-activity
• Appetite disturbances
• Crying, sighing
• Visiting places that are reminders of the deceased
• Calling out for the deceased

Thoughts:

• Disbelief
• Confusion
• Preoccupation with thoughts and memories
• Sense of his/her presence

Feelings:

• Sadness
• Anger
• Guilt or self-reproach
• Anxiety
• Loneliness
• Numbness
• Fatigue
• Helplessness
• Shock
• Yearning
• Relief

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Assessment and Designation of Resources: Nebraska's Spousal Impoverishment Protection Law (1989)

What would happen if your spouse was not able to live at home due to poor health or confusion?

Would you have to spend all of your resources to pay for your spouse's nursing home care?

For Example:
Barney is not able to take care of Betty at home any more, due to her health. He is thinking about admitting her to the long-term care facility (nursing home) down the street.

• They own about $100,000 in resources (assets).
• Their total income is $1,600 per month

QUESTION: Does Barney have to spend all of their money before the state helps pay for Betty's care?

ANSWER: NO - because of the Spousal Impoverishment Protection Law.

The Spousal Impoverishment Protection Law (1989)
This federal law protects spouses of nursing home residents from losing all of their income and assets to pay for the spouse's nursing home care. A couple's assets and income are divided according to this law.

Medicaid
This government insurance program helps people with low finances. To get Medicaid help for nursing home care, the assets of the person needing help must be at $4,000 or less. Medicaid is handled by Nebraska's Department of Health and Human Services.

Assessment of Assets (under the Spousal Impoverishment Protection Law)
Most assets (such as bank accounts, stocks, bonds, etc.) are considered joint assets between husband and wife. (It doesn't matter in whose name they are placed.) The Assessment of Assets is not a split of assets.

QUESTION: What amount of the couple's assets is the spouse at home allowed to keep?

ANSWER: Maximum - At least half of all countable assets, up to a total of $81,960 in 1999. Minimum - At least $16,392 in 1999.

For Example:
The total assets owned by Barney and Betty are $100,000. Half of Barney and Betty's assets are $50,000. Barney is able to keep $50,000.

The couple would need to spend the remaining $50,000 down to $4,000 before Medicaid would begin to help pay for Betty's nursing home costs. An application for Medicaid is required when the couple has spent down their assets to the appropriate level.

In addition to half of the countable assets, the couple may also keep their home, one automobile and their household furnishings. The couple may also prepay their funeral expenses.

Income (under the Spousal Impoverishment Protection Law)

• At-Home Spouse
  Income in your name remains your own (Social Security, pensions, interest, dividends, etc.). The spouse at home may keep all of his/her personal income.
• Nursing Home Spouse
  The spouse in the nursing home may be required to use most of his or her income to pay for care, except for a personal allowance of $40 per month ($50 per month, effective 9/1/99) and $90 per month for veterans.

After the income has been split, the At-Home Spouse may be able to keep more of the Nursing Home Spouse's income, IF…

• The spouse at home gets less than $1,383 every month (as of 3/1/99).
• The spouse at home has to pay rent, mortgage or utilities.
  

For Example:
Barney may keep all of his income (checks made out in his name, plus his half of the income that is jointly owned). Remember, if Barney's income was lower than $1,383 per month, then he could keep part of Betty's income.

Checks made out in Betty's name, plus her half of any jointly owned income, would be considered hers and would go to the nursing home to pay for her care, unless a portion is needed for Barney. (Betty may have $40 from her income each month, as her allowance for personal needs.) Betty will also continue to pay her Medicare Supplement insurance premium with her income.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping with Stress

Source: Barbara J. Helms, MA and David R. Wekstein, Ph.D., "For Those Who Take Care" University of Kentucky.

1. Always do your best. Seek the training you need to be the best you can be at your position. Maintain high standards. Do not let others bring you down.
   
2. Leave your personal problems at home. It is difficult to deal with personal stress and the stress of the job at the same time. Give yourself a break and leave the personal problems at home. One type of stress at a time will be a little easier to handle. In addition, the people who you are caring for have enough trouble dealing with their own problems. They will not be able to cope with yours, too. People with memory loss pick up on your mood and distress and will respond in that way. That makes them more "difficult" to care for - and it isn't their fault. Above all, do not take things out on the residents. If your problems are too difficult to leave behind, you may wish to ask to be reassigned for a while to a position that does not deal with direct care.
   
3. Do not take things personally. Residents with memory loss or their families may say or do things that could hurt your feelings. Remember, they are under a great deal of stress, too. They are usually not trying to hurt you on purpose. By responding to them in patience, you are providing a great service.
   
4. Learn as much as you can about your people and their problems. It is important to know the life stories and possibly the family history to help you understand the reactions some people will have to certain situations. Looking at life from their perspective can be more helpful to them and can take some of the "responsibility for their happiness" off your own shoulders. Many times, discontent, depression, anger, and self-centeredness are all life patterns. Sometimes these personality traits are in response to the terrible illness they are experiencing. You will not know unless you investigate. If you were in this situation, wouldn't you like the people who care for you to understand you?
   
5. The secret to happiness is not doing what one likes to do but liking what one has to do. Sometimes you may be asked to do things that are not exactly pleasant. If the tasks are too difficult, do not hesitate to talk to your supervisor or to ask for help. However, everyone, now and then, must do things they would rather not do. Perspective helps. If you have to do it, you might as well make the best of it.
   
6. You are not alone. People "on the outside" cannot really understand the things you go through, the stress you "endure," the grief you experience, the joy you feel when doing this job. Seek the support of your coworkers. Also, look for opportunities to give support to your coworkers. Many facilities have support groups for the staff to discuss the feelings, frustrations, etc., that are a daily part of caring for individuals with memory loss. This may be a wonderful option for your facility. Make the suggestion.
   
7. Maintain a sense of humor. At times, the experiences in a long-term care facility are absurd and "silly." It is okay to laugh. It is even therapeutic. Make sure the laughter is focused at the situation or yourself and not the resident. If you do not have much of a sense of humor, you probably do not belong in caring for people with Alzheimer's disease.
   
8. Lighten up. Working with people who have a memory loss can be sometimes sad, sometimes funny, sometimes tragic, always rewarding, and usually unpredictable. Go with the flow. Relax. Be flexible.
   
9. Take time off or time away. If you are under a lot of stress at work and/or at home and the stress is not under control, you may do more harm than good at work. Stressed-out staff have difficulty working with other staff and often take it out on residents. Take a "mental health" day or some vacation time or request a transfer to another part of the facility. Sometimes the only treatment for stress is getting away for a while.
   
10. A few other suggestions:

• Assign people to people not to floors or wings.
• Be accountable to each other.
• Participate in education and training programs.
• Avoid "turf battles" (such as "That's not my job." "This department doesn't do that."). Be a team!
• Always keep the right and dignity of the residents before your own.
• Maintain open communication with family as well as with other staff and shifts.
  
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Handling Everyday Hassles on the Job

• Know your stressors. What tends to upset you? Learn to recognize your physical symptoms of stress, such as headache, stiff shoulders, stomachache, etc. These are your clues to pay attention and take action.
  
• Learn to control your stressors. Analyze the situation. Can you avoid or make the situation less intense for you and/or your patient? Always ask the question, "Is this really a problem?" or "Am I overreacting out of fatigue, anger, frustration, etc.?" How often does the problem occur? Does it really happen that often? Keep a record.
  
• Expect the unexpected. In caring for Alzheimer's patients, prioritize important tasks but be flexible if the day doesn't go as you planned.
  
• Take the patient's perspective. Is his behavior a reasonable response given the reality of his situation? He may ask you the same question 10 times within the hour because he can't remember that he asked before. It really is new information for him each time.
  
• Get help. Talk to coworkers and supervisors about the cause of your stress. They may have suggestions to help solve the situation.
  
• Develop and practice stress-reducing rituals. Activities such as playing cards, walking, meditating, praying, and anything that has a calming effect on you are good examples. Do things you enjoy and do them regularly to prevent a buildup of stress. Prolonged stress can lead to physical illness and affect how you feel about your job and your patient.
  
• Know your limitations and the limitations of your patient. Remember your patient's behavior is the result of his disease. His limitations are often as frustrating to him as they may be to you.
  
• Be content with doing the best job you can for the patient at this time. The person with Alzheimer's Disease does not get better. Still, that individual deserves the best care we can give him. He still appreciates warmth, kindness, and caring.
  
• Have fun. Be good to yourself. Humor may be your best antidote. Try to incorporate humor in you life on a regular basis. Caregiving is easier when we can find light moments in what is often a very serious, demanding job.
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Plain Talk about Handling Stress

You need stress in your life! Does that surprise you? Perhaps so, but it is quite true. Without stress, life would be dull and unexciting. Stress adds flavor, challenge, and opportunity to life. Too much stress, however, can seriously affect your physical and mental well-being. A major challenge in this stress-filled world of today is to make the stress in your life work for you instead of against you.

Stress is with us all the time. It comes from mental or emotional activity and physical activity. It is unique and personal to each of us. So personal, in fact, that what may be relaxing to one person may be stressful to another. For example, if you are a busy executive who likes to keep busy all the time, "taking it easy" at the beach on a beautiful day may feel extremely frustrating, nonproductive and upsetting. You may be emotionally stressed from "doing nothing." Too much emotional stress can cause physical illness such as high blood pressure, ulcers, or even heart disease. Physical stress from work or exercise is not likely to cause such ailments. The truth is that physical exercise can help you relax and handle your mental or emotional stress.

Hans Selye, M.D., a recognized expert in the field, had defined stress as a "nonspecific response of the body to a demand." The important issue is learning how our bodies respond to these demands. When stress becomes prolonged or particularly frustrating, it can become harmful causing distress or "bad stress." Recognizing the early signs of distress, and then doing something about them can make an important difference in the quality of your life, and may actually influence your survival.

Reacting to Stress

To use stress in a positive way and prevent it from becoming distress, you should become aware of your own reactions to stressful events. The body responds to stress by going through three stages: (1) alarm, (2) resistance, and (3) exhaustion.

Let's take the example of a typical commuter in rush hour traffic. If a car suddenly pulls out in front of him, his initial alarm reaction may include fear of an accident, anger at the driver who committed the action, and general frustration. His body may respond in the alarm stage by releasing the hormones into the bloodstream which cause his face to flush, perspiration to form, his stomach to have a sinking feeling, and his arms and legs to tighten. The next stage is resistance, in which the body repairs damage caused by the stress. If the stress of driving continues with repeated close calls or traffic jams, however, his body will not have time to make repairs. He may become so conditioned to expect potential problems when he drives that he tightens up at the beginning of each commuting day. Eventually, he may even develop one of the diseases of stress, such as migraine headaches, high blood pressure, backaches, or insomnia. While it is impossible to live completely free of stress and distress, it is possible to prevent some distress as well as to minimize its impact when it can't be avoided.

Helping Yourself

When stress does occur, it is important to recognize and deal with it. Here are some suggestions for ways to handle stress. As you begin to understand more about how stress affects you as an individual, you will come up with your own ideas of helping to ease the tensions.

• Try physical activity. When you are nervous, angry, or upset, release the pressures through exercise or physical activity. Running, walking, playing tennis, or working in your garden are just some of the activities you might try. Physical exercise will relieve that "up tight" feeling, relax and turn the frowns into smiles. Remember, your body and your mind work together.
  
• Share your stress. It helps to talk to someone about your concerns and worries. Perhaps a friend, family member, teacher, or counselor can help you see your problem in a different light. If you feel your problem is serious, you might seek professional help from a psychologist, psychiatrist, or social worker. Knowing when to ask for help may avoid more serious problems later.
  
• Know your limits. If a problem is beyond your control and cannot be changed at the moment, don't fight the situation. Learn to accept what it is for now until you can change it.
  
• Take care of yourself. You are special. Get enough rest and eat well. If you are irritable and tense from lack of sleep or if you are not eating correctly, you will have less ability to deal with stressful situations. If stress repeatedly keeps you from sleeping, you should ask your doctor for help.
  
• Make time for fun. Schedule time for both work and recreation. Play can be just as important to your well-being as work. You need a break from your daily routine to just relax and have fun.
  
• Be a participant. One way to keep from getting bored, sad, and lonely is to go where it's all happening. Sitting alone can make you feel frustrated. Instead of feeling sorry for yourself, get involved and become a participant. Offer your services in neighborhood or volunteer organizations. Help yourself by helping other people. Get involved in the world and the people around you, and you'll find they will be attracted to you. You're on your way to making new friends and enjoying new activities.
  
• Check off your tasks. Trying to take care of everything at once can seem overwhelming, and, as a result, you may not accomplish anything. Instead, make a list of what tasks you have to do, then do one at a time, checking them off as they are completed. Give priority to the most important ones and do those first.
  
• Must you always be right? Do other people upset you - particularly when they don't do things your way? Try cooperation instead of confrontation; it's better than fighting and always being "right." A little give and take on both sides will reduce the strain and make you both feel more comfortable.
  
• It's OK to cry. A good cry can be a healthy way to bring relief to your anxiety, and it might even prevent a headache or other physical consequence. Take some deep breaths; they also release tension.
  
• Create a quiet scene. You can't always run away, but you can "dream the impossible dream." A quiet country scene painted mentally, or on canvas, can take you out of the turmoil of a stressful situation. Change the scene by reading a good book or playing beautiful music to create a sense of peace and tranquility.
  
• Avoid self-medication. Although you can use drugs to relieve stress temporarily, drugs do not remove the conditions that caused the stress in the first place. Drugs, in fact, may be habit-forming and create more stress than they take away. They should be taken only on the advice of a doctor.

Source: Edna L. Ballard, MSW (master of social work) and Lisa P. Gwyther, MSW. "Giving a Little Extra." Optimum Care of the Nursing Home Resident with Alzheimer's Disease. Duke University Medical Center.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Taking Care of Yourself

What Other Aides Say They do When the Going Gets Tough

Source: Edna L. Ballard, MSW and Lisa P. Gwyther, MSW. "Giving a Little Extra." Optimum Care of the Nursing Home Resident with Alzheimer's Disease. Duke University Medical Center.

1. "At lunch time, I go out to my car and listen to gospel music. That always calms me down and helps me see things differently. It gives me strength somehow."
   
2. "I tell myself that the patient can't help how he is. I remember what this person was like before he became so dependent. I know that they need me even if they don't know. On rare occasions, one of them may give a smile, a hug or a kiss. That makes it all worthwhile."
   
3. "I try to keep a certain attitude. It's like carrying certain baggage. When I come to work, I know I have a certain job to do, so I pick up that baggage (attitude). When I leave work, I can leave those problems behind and take on a different attitude. I see the problems of caring for Alzheimer's patients as part of the job. It's my job to be the best I can."
   
4. "It helps to talk to other nursing assistants. Sometimes they have an idea how to handle a particular problem. Sometimes you just have to talk to somebody who knows what you have to put up with."
   
5. "When I leave work, I leave the job here. I know it's important not to take the problems home with me. I have a family and I have a responsibility to them. I don't want them to pay for the hard day I may have had."
   
6. "I try to balance work with positive things outside of work. I have a very supportive family. I do a lot of fun things with them and with my friends. I think that helps me face some of the more difficult, sometimes, even nasty, behavior of some patients."
   
7. "The hardest part for me is dealing with families who don't understand or appreciate what you really do to care for their family member here in the nursing home. They can be pretty demanding sometimes. I think some families take it out on staff, because they are feeling guilty or frustrated. It's hard to take some of the abuse when you are doing the best job you can. I try to remind myself not to take this all personally."
   
8. "I work hard at keeping myself physically and spiritually healthy. That's the only way to do it. This is a hard job!"
   
9. "I do a good job. My faith and belief that this is important helps me on those difficult days when patients, families and sometimes even other staff all seem to be unreasonable."

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Coping Techniques for Caregivers

Source: Barbara J. Helms, MA and David R. Wekstein, Ph.D., "For Those Who Take Care" University of Kentucky.

1. Always do your best. Seek the training you need to be the best you can be at your position. Maintain high standards. Do not let others bring you down.
   
2. Leave your personal problems at home. It is difficult to deal with personal stress and the stress of the job at the same time. Give yourself a break and leave the personal problems at home. One type of stress at a time will be a little easier to handle. In addition, the people who you are caring for have enough trouble dealing with their own problems. They will not be able to cope with yours, too. People with memory loss pick up on your mood and distress and will respond in that way. That makes them more "difficult" to care for - and it isn't their fault. Above all, do not take things out on the residents. If your problems are too difficult to leave behind, you may wish to ask to be reassigned for a while to a position that does not deal with direct care.
   
3. Do not take things personally. Residents with memory loss or their families may say or do things that could hurt your feelings. Remember, they are under a great deal of stress, too. They are usually not trying to hurt you on purpose. By responding to them in patience, you are providing a great service.
   
4. Learn as much as you can about your people and their problems. It is important to know the life stories and possibly the family history to help you understand the reactions some people will have to certain situations. Looking at life from their perspective can be more helpful to them and can take some of the "responsibility for their happiness" off your own shoulders. Many times, discontent, depression, anger, and self-centeredness are all life patterns. Sometimes these personality traits are in response to the terrible illness they are experiencing. You will not know unless you investigate. If you were in this situation, wouldn't you like the people who care for you to understand you?
   
5. The secret to happiness is not doing what one likes to do but liking what one has to do. Sometimes you may be asked to do things that are not exactly pleasant. If the tasks are too difficult, do not hesitate to talk to your supervisor or to ask for help. However, everyone, now and then, must do things they would rather not do. Perspective helps. If you have to do it, you might as well make the best of it.
   
6. You are not alone. People "on the outside" cannot really understand the things you go through, the stress you "endure," the grief you experience, the joy you feel when doing this job. Seek the support of your coworkers. Also, look for opportunities to give support to your coworkers. Many facilities have support groups for the staff to discuss the feelings, frustrations, etc., that are a daily part of caring for individuals with memory loss. This may be a wonderful option for your facility. Make the suggestion.
   
7. Maintain a sense of humor. At times, the experiences in a long-term care facility are absurd and "silly." It is okay to laugh. It is even therapeutic. Make sure the laughter is focused at the situation or yourself and not the resident. If you do not have much of a sense of humor, you probably do not belong in caring for people with Alzheimer's disease.
   
8. Lighten up. Working with people who have a memory loss can be sometimes sad, sometimes funny, sometimes tragic, always rewarding, and usually unpredictable. Go with the flow. Relax. Be flexible.
   
9. Take time off or time away. If you are under a lot of stress at work and/or at home and the stress is not under control, you may do more harm than good at work. Stressed-out staff have difficulty working with other staff and often take it out on residents. Take a "mental health" day or some vacation time or request a transfer to another part of the facility. Sometimes the only treatment for stress is getting away for a while.
   
10. A few other suggestions:

• Assign people to people not to floors or wings.
• Be accountable to each other.
• Participate in education and training programs.
• Avoid "turf battles" (such as "That's not my job." "This department doesn't do that."). Be a team!
• Always keep the right and dignity of the residents before your own.
• Maintain open communication with family as well as with other staff and shifts.
  
  

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Adult Day Care

Adult day care centers provide a structured setting in which people with Alzheimer's Disease and other disabilities may enjoy group activities such as exercise and craft-making, and benefit from personal counseling, therapy and other services.

Reasons for using Adult Day Care

Most likely, one of the reasons you may be considering using a day care center is to give yourself an opportunity for relief time from caregiving. Give yourself permission to use day care. Day care benefits both the caregiver and the person with Alzheimer's. By using day care, you'll have time to rest, relax, and finish other tasks.

As a result, you will return to the task of caregiving feeling refreshed and renewed. If you find yourself feeling guilty, ask yourself: "If I wear myself out to the point of total exhaustion, what good will I be to my family member? If I don't take a break from caregiving, will I be able to handle his/her needs as well?"

Reflect on the benefits of day care for the person with dementia. Remember that day care offers the person with Alzheimer's opportunities to be with other people and participate in activities in a safe environment. Moreover, professionals at a day care center can help evaluate the person and provide you with ideas for enhancing caregiving.

Selecting a center

Day care centers may vary widely, and it is important to examine the key components of the best setting for your family member. By asking the right questions, you can find a day care arrangement that's right for you and the person with Alzheimer's disease. You may want to begin with the following:

• Consult a variety of sources to find an appropriate day care center. Many caregivers rely on the recommendations of local Chapters of the Alzheimer's Association and of other caregivers who are members of support groups. Some chapters provide day care services either through their organization or through cooperation with another agency. Others consult with senior centers and local are agencies on aging.
  
• Give the center a chance. Consider using adult day care at least twice a week for a month before making a final decision. Occasional use won't give you an accurate picture of how the center operates. In addition, give your loved one time to adjust to the experience of going to the day care center. While some people may resist going to the center at first, they often look forward to the visit after several weeks of attending, meeting people, and joining in activities.
  
• Reevaluate your need for day care. At some point the person with Alzheimer's may need more care than the center can provide. Center staff and support groups can help evaluate your needs for future care.
  

Action Steps

Consider the following issues in evaluating a day care center that's appropriate to your needs:

Center Clients

Does the day care center provide services for people with different types of impairments, as well as those in good physical health? Knowing about any service restrictions before using the center may help prevent problems.

Assessment

Will the center evaluate the person's needs? How will this evaluation be accomplished and how often will it be repeated? Will it cover medical needs, social and family history, cognitive functioning, and social skills? Some centers perform assessments in the person's home.

Services

Does the center offer the services that you and the person with dementia need? These are some of the specific services you may want to investigate: (Keep in mind that few adult day care programs offer all of the services described below, and not all of these services are necessary for a program to be of high quality.)

• Behavior Management - Is the center prepared to deal with wandering, incontinence, hallucinations, sexually inappropriate behavior, or speech difficulties?
  
• Counseling - Will the center provide support for clients and families? For example, can they offer guidance on outside resources and arrange for supportive care in the home?
  
• Health Services - Will the center provide blood pressure checks and physical, dental, foot, eye, and ear examinations? Will the center dispense medication and/or offer medication reminders?
  
• Nutrition - Does the center provide nutritious meals and snacks? To make sure, you may want to sample one of the meals. In addition, can the center accommodate special diets or provide culturally specific menu? Does the center provide some sort of nutritional education program?
  
• Personal care - Will the center's staff provide help with hairstyling, toileting, eating, showering, and appearance-related tasks?
  
• Recreation - Does the center offer a program of activities that the person with dementia can participate in and enjoy?
  
• Special Needs - Is the center equipped to deal with someone who is wheelchair restricted, hearing or visually impaired, or handicapped in another way.
  
• Therapy - Will the center help arrange for needed physical, occupational or speech therapy? Are there therapists on site or on call?
  

Accessibility

Most centers are open from early morning to early afternoon, usually from 8:00 a.m. to 4:00 p.m., Monday through Friday. Some have extended or weekend hours. People may attend the center as little as one day per week, or as many as five. Be sure to ask about the minimum attendance requirements and the notification policy for absences.

Cost

Many centers offer services on sliding scales, where caregivers pay according to their ability or income. In some states, Medicaid covers costs for people with very low income and few assets. Be sure to ask about basic fees, financial assistance, and additional charges for such services as crafts or field trips.

Location and Transportation

Getting to and from some centers may consume a large part of your day and be stressful on the impaired person. However, some centers offer pickup and drop-off transportation services, while others provide transportation for outings and medical appointments. Be sure to ask about the policy for late arrival or late pickup.

Facility

Evaluate the overall appearance and quality of the facility.

• Is it warm, inviting, and free of clutter?
• Is there adequate space for activities and for furniture?
• Is space available for outdoor activities?
• Are there secured areas for outside walking?

Staff

Assess the qualifications of the staff.

• What is the number of staff for each client?
• Are the staff provided with dementia-specific training?
• Does the center have a physician, nurse, or health care professional on staff or on call?
• If the center uses volunteers, are they adequately trained and supervised?
• Are staff warm and friendly to family members and caregivers?
• How well do staff handle people with behavioral problems?

You may also want to discuss the person's specific problems with the center's director or "intake coordinator" to determine their level of disease awareness.

Evaluating day care settings for your loved one with Alzheimer's is time-consuming, but important. Choosing the best facility and program for your family member will help ease the burden of daily caregiving.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Rhonda J. V. Montgomery, Ph.D., Director, Gerontology Center; Associate Director, Schiefelbush Institute for Life Span Development; Professor, Department of Sociology, University of Kansas, Lawrence, Kansas.

Additional information was also provided by:

• The Northern Virginia Chapter of the Alzheimer's Association.
• The Duke Family Support Program, Duke University, Chapel Hill, North Carolina

For more information on this topic, consult the following sources:

• Aging Network Services, Bethesda, Maryland 1-800-477-4267
• Healthy Older People, National Health Information Center
  1-800-336-4797
• National Institute on Adult Day Care, Washington, DC 1-800-424-9046 (Ask about "Guidelines for Adult Day Care Centers Serving Individuals with Alzheimer's Disease and Other Dementias")
• Robert Wood Johnson Foundation, PO Box 2316, Princeton, New Jersey 08543-2316. (Ask about "Dementia Care and Respite Services Program" and "Partners in Caregiving: the Dementia Services Program.")
  

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Grief, Mourning and Guilt

It is common for both the impaired person and the caregiver to experience feelings of loss. Persons with Alzheimer's Disease experience feelings of loss when realizing the gradual changes in their own abilities. As a caregiver, you will experience both your own loss and loss for your family member. Your feelings of loss will likely involve the natural phases of grieving: denial, anger, guilt, physical symptoms, and eventually acceptance.

As the disease progresses, and the person's abilities vary, you will notice fluctuations in your feelings. As the person loses more functioning, the realization of seeing the person depart - not through death, but through the gradual loss of memory, thinking abilities, and changes in personality, may become painful. Moving through a grieving process may help you cope with your losses. No two people grieve in exactly the same way. Therefore, an understanding of these processes may be helpful to you. Some common experiences involve:

Denial

• Thinking that the person is not ill.

Physical Symptoms

• Feeling helpless, weeping or sighing.
• Changes in appetite or sleep patterns.
• Feeling exhausted and empty.

Anger

• Feeling frustrated with your family member or the tasks of caregiving

Guilt

• Feeling despair or depression - withdrawing from social activities.
• Withdrawing from the person - investing less intense emotional involvement.

Acceptance

• Acknowledging that caring for a terminally ill family member has brought meaning to your life.
• Observing that the grieving process may impact all aspects of your life.
• Appreciating the personal growth involved in surviving life's losses.

Guilt

In the process of grieving and mourning, many caregivers find they are overwhelmed by one particular feeling: guilt. Common reasons for feeling guilty are:

• Feeling that something that happened in the past may have caused the person's condition.
• Feeling you should have done something differently after the person was diagnosed with the condition.
• Feeling badly that you are still able to enjoy life while the person is unable to do so.
• Feeling as if you have failed, especially if the person with Alzheimer's must be placed in a nursing home.
• Having negative thoughts about the impaired person; wishing that he or she would disappear or die.
• Feeling angry with other family members because they live far away, criticize, or prefer to remain uninvolved in caregiving.
• Feeling you had a poor relationship with the person before the diagnosis was made.

In many cases, feelings of guilt are linked with unrealistic expectations or thoughts like these:

• "I must be perfect."
• "I should have done…"
• "I must always feel love for the person."
• "I must do everything for the person."
• "I must visit the person everyday."

To help you work through these feelings, you may want to use the following suggestions:

Action Steps

Confront your feelings.

• Accept guilt as a normal part of loss and grief.
• Ask yourself these questions:
  • "Are my expectations realistic?"
  • "Did I make the best decision possible with the information I had at the time?"
  • "Does it help the situation to feel guilty or does it waste my energy?"

Find ways to forgive yourself.

• Share your feelings with a sympathetic friend.
• Accept things that are beyond your control, and make responsible decisions for things you can control. Many people turn to their spiritual beliefs for consolation.
• Complete unfinished business with others. For example, you may want to write a letter to someone asking for his or her forgiveness. (You don't need to mail the letter.) In addition, reflect on your positive and negative memories of the person with Alzheimer's.
• Learn to feel comfortable with deserving good things happening in your life. Begin to change unrealistic expectations or demands. As time permits, get involved in new or meaningful activities you enjoyed in the years before caregiving began.

For many caregivers, switching from concentrating all their efforts on caring for another person, to caring for themselves is difficult. However, caring for yourself can be beneficial to the impaired person as you can gain renewed energy and a feeling of support by taking care of your needs.

Accepting your feelings.

Remember that your feelings are normal for anyone in your situation. By learning to recognize and accept your feelings, you can begin the process of healing.

Turn to others.

• Share your grief with another person. Look to a sincere, nonjudgmental friend who will let you express yourself freely.
• If you prefer to talk to a therapist who has professional training in grief and mourning, you may want to interview several therapists and choose someone with whom you feel a special rapport.
• Talk to other caregivers and family members. This will give you an opportunity to express your feelings, share your experiences, receive much-needed emotional support, and develop new caregiving skills.
• Joining a support group offered by the local Chapter of the Alzheimer's Association, for example, may also help you combat some of the feelings of isolation and loneliness which may accompany caregiving.

Take care of yourself.

Remember that caring for yourself is as important as caring for the person with Alzheimer's disease. Here are some ways to avoid becoming a "second victim" of Alzheimer's disease:

• Return to some aspects of your daily routine; you will feel less isolated and out of step with other people.
• Bring balance into your life by doing things that bring you joy and comfort. You may want to think of your life as moving along two parallel tracks: one is devoted to caregiving and the other is devoted to caring for yourself. Be sure to schedule time to move from caregiving to the self-care track.
• Give yourself time to rest so that you will be less vulnerable to physical illnesses that may result from stress. Consider listening to relaxation tapes, soothing music, or trying deep breathing exercises to help relieve stress.
• Allow time for physical exercise, play, or spending time in new surroundings. For example, you may want to get in the habit of taking a vigorous half-hour walk.
• Let yourself laugh. Try to find humor even in difficult situations. By recognizing the humor in everyday life and giving yourself the release that comes with laughter, you can reawaken the joy of living beyond the daily chores of caregiving.
• Take time to dream. Dreaming is a healthy sign of belief in your future. Allowing yourself to visualize what is to come will help you to remember that your life is more than this caregiving experience. In the process of grieving, old dreams will be released when new ones are firmly in place.

Grieving and mourning are natural processes that caregivers experience. The length of time and when it occurs will vary with the severity and length of the disease. Understanding these processes and how to cope with them should help you provide quality care.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

For more information about Grief and Loss, see the NebGuide article from Nebraska Cooperative Extension.

The primary resource for this fact sheet was Carol J. Farran, DNSc, RN, Associate Professor, Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois; and Geraldine Monbrod-Framburg, Caregiver, Manager, Inquiries Processing, Alzheimer's Association, Chicago, Illinois.

Additional information was provided by the following Chapters of the Alzheimer's Association: St. Louis, Mid-Missouri, and Lincoln.


Other Resources include:

• CJ Farran, DNSc and G. Monbrod-Framburg. "Loss, Mourning, and Suffering: The 'On-going Funeral' of Dementia," Self-Help -- Concepts and Applications. A. Katz, H. Hedrick, D. Isenberg, L. Thompson, T. Goodrich, A. Kutscher, editors. Philadelphia: The Charles Press, 1992.
• D. Jeanne Roberts, MA. Taking Care of Caregivers. Palo Alto: Bull Publishing Co., 1991

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Vacationing

Vacations are a time for families to share new experiences, see interesting places, and get rest and relaxation. If you are the caregiver of a family member with Alzheimer's, it will be important for you to consider the stage of the person's illness, any impairments that might affect traveling, and what adaptations can be made to make a vacation relaxing and enjoyable for everyone. You will want to consider the following suggestions before you take your next vacation.

Action Steps

Plan a manageable vacation.

• Think about your expectations. If you choose to travel with the family member, you will have many of the same responsibilities you have at home. In that sense, this will be a "working" vacation. If you are interested in rest and relaxation for yourself, you may want to consider taking time away with a friend and arranging respite care for the person in your home or at a local care facility.
• Stick with the familiar. Consider vacationing in ways the person was accustomed to before the onset of the disease. For example, if the person has never traveled by airplane, it would probably be better to drive. If the person has never taken a beach vacation, choose something familiar such as a trip to a nearby attraction. Spending a short time traveling to a destination may be most helpful to the person.
• Stay away from busy places or from situations that may cause the person to feel overstimulated or anxious. In most cases, large cities such as New York, Chicago, or Los Angeles might make the person confused or anxious. Large amusement parks might also pose problems. Visiting a relative, who has a large family with a busy, bustling household, may not be a relaxing time.
• Keep your vacation simple. For example, avoid the temptation to plan a fast-paced sightseeing trip. Instead, plan a trip that involves as few changes as possible. Escorted tours can be enjoyable if you are traveling with a group of people you know well and who understand your caregiving responsibilities.
• Consider a short trip. If you are unsure how the person will react to traveling, consider a shortened version of a long trip. If the patient reacts positively, you can return at a later time for a longer visit.
• Choose a "fail-safe" option. Pick a vacation package that allows you to leave early -- without financial penalty -- if the person becomes ill or wants to return home.
• Develop a list of destinations and contact information for family members at home as well as a list of medical professionals along your travel route for you and your loved. Alzheimer's Association Chapters are an excellent source of medical and social service contacts.

Consider the needs and safety of the person with Alzheimer's.

• Advise airlines, hotels, or tour operators that you are traveling with a person who has memory impairment, and provide some examples of your safety concerns and special needs. For example, you may want to reserve a wheelchair and plan for special meals prior to an airplane flight, or let the tour operator know that your family member cannot be unaccompanied.
• Prepare identification items for your traveling companion. Make certain that your family member wears an identification bracelet or clothing tag with his/her full name and your name. You will want to keep all credit cards, travelers' checks, and passports with you for security.
• Never leave your loved one alone. If you are on a tour sponsored by your church or a local civic group, you may be able to rely occasionally on help from friends. Never ask a stranger to watch the person. A person who is unacquainted with the effects of the disease and doesn't know you or the person won't understand how to react in a difficult situation.
• Take security precautions. For example, if you are traveling by car, automatic locks are useful. To prevent the person from exiting the car, you may want to remove the locks from his/her side of the car. In most cases, the person should sit next to the driver and not in the back seat. Keep in mind that automatic windows can also be dangerous.
• Prepare your traveling companion. Telling your loved one about the trip in advance may help him/her feel part of the decision-making process. On the other hand, you may only need to inform him/her shortly before leaving with a simple explanation: "We're going on a trip together to Michigan. I'm going to start packing some of your things. Can you help me pack this suitcase?" You may also find it less disruptive simply to announce your plans on the day you are leaving.
• Time your travel. If (s)he travels better at a specific time of the day, you may want to make plans accordingly. Take breaks along the way for snacks.
• Anticipate and avoid delays. If you are traveling by train, bus, or plane, have a friend drive you to the departure point to relieve you of parking the car and handling the luggage. Call ahead to determine if your departure will be delayed. (Many people find it disturbing to wait for hours in crowded terminals.) In addition, bring along items such as magazines, audiotapes, or a deck of cards to entertain and relax your family member.
• Plan ahead for rest room use. If the person is a man and you are a woman, or vice versa, you may want to bring along a friend or family member or solicit the help of a staff member who can accompany him/her into the public rest room at a terminal. Once aboard the train or plane, see if you can accompany him/her to the rest room. It may also be helpful to provide extra protection by using adult incontinence products.
• Allow for extra time. Avoid the temptation to cram several activities into one day. Instead, plan for a single activity and have a couple of alternatives in mind if there is extra time available. In addition, you and the person may need more time in between activities to relax and rest.
• Maintain familiar eating patterns and times. If your family member is used to eating at the kitchen table every evening at home, it is probably not wise to plan for a dinner in a crowded restaurant. You may want to find a very quiet restaurant, use room service, or stay at a hotel or motel that has a kitchen available. Also, serve him/her the same type of food at the same time of day that you do at home.
• Maintain daily routines. For example, if the person bathes or showers every morning, you should try to maintain that routine.
• Have faith in your own knowledge, judgment and experience. No one knows the individual better than you do. While a growing number of hotel and tour operators have oriented their employees in dealing with persons with dementia, you understand best what does and doesn't work. Have confidence in your abilities and in your loving concern as a caregiver and enjoy your special time together.

 

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 chapters and 1,600 support groups nationwide, where family members of patients with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Liz Kendall, RN, BSN, Caregiving Program Specialist, Center on Rural Elderly, University of Missouri, Kansas City, Missouri.

Special thanks and appreciation go to the following chapters of the Alzheimer's Association: Greater Dallas, Hampton Roads, Honolulu, Manatee Sarasota Counties, and South Central Pennsylvania.

Special thanks also goes to the Duke Alzheimer's Family Support Center, Duke University, Chapel Hill, North Carolina.

Other Resources include:

• Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: Johns Hopkins University Press, 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Just the Facts and More: Visiting

Visiting allows you and the person with Alzheimer's disease to enjoy the company of others. Maintaining social contacts takes extra planning and effort by the caregiver. As the caregiver, you can assist family and friends with ideas to make visits meaningful, comfortable, and to use communication techniques which will enhance their interactions with the impaired person.

Often times people may hesitate to spend time with the person with Alzheimer's because they worry about not knowing what to do or say. Others may not understand the behavior changes that are caused by the disease, and feel uncomfortable about visiting.

By working through the concerns of friends and family members, you can continue to give yourself and the person with Alzheimer's an important social outlet. Here are some tips to assist you in having visitors to your home and visiting outside of your home.

Action Steps

Invite visitors to your home.

• Don't wait for friends and family to ask if they may stop by for a visit. Instead, take the initiative to contact them and explain that while Alzheimer's Disease has changed your lives in some ways, you value their friendship and support and want it to continue. Then suggest a time when they might come over.
• Plan for a successful visit. While the visit certainly doesn't need to be perfect, it should be relaxing and comfortable for everyone: visitor, caregiver, loved one, and other family members.
• Prepare visitors before the visit. Educate visitors about how the person with Alzheimer's may have changed - physically, emotionally, and intellectually. Mention specific changes in behavior such as fidgeting, wandering or incontinence. Provide suggestions about how to communicate more easily with the person, by talking to him/her one-on-one, or by understanding that (s)he may repeat things, or ask the visitor a question already answered. This information can help lessen the visitor's anxiety.
• Clarify the purpose of the visit. Some people are reluctant to visit because they don't want to be drawn into the heavy responsibilities of caregiving. Be sure to mention that the purpose of the visit is purely social and not to relieve you of caregiving. Make sure that visitors know that their time is a momentary gift of love to the person and a gift of support to you.
• Suggest specific activities such as taking the person to lunch, sitting on the porch, taking a walk, or looking through a photograph album together.
• Remain accessible to visitors. One of the greatest fears visitors have is that they will be left alone to communicate with or care for the person with dementia. If you are close by, visitors can share specific questions or problems with you. Visitors also may want the chance to talk to you.
• Adjust the nature of the visit to the visitor. Some visitors feel they must do or bring something in order to make the visit worthwhile. You may want to suggest that these visitors bring flowers or special cards, read a chapter from a favorite book, or sing a special song. It is important that they conclude the visit feeling they have delivered something of value to you and to the person.
• Communicate with potential visitors regularly or ask them to confirm visits by calling ahead. Inform visitors that the person's condition may change from month to month, week to week, or day to day. For example, it may be better for some patients to have morning visitors, while other may benefit from late-afternoon visits.
• Be patient with people, and encourage people to be patient with the impaired person. Practice forgiveness. Even people in such caring professions as social work or pastoral care may have difficulty coming to terms with Alzheimer's. Some people whom you thought you could depend on may avoid you, while others may rally to your side. Try not to take negative reactions personally.
  

Visiting others' homes

• Prepare your host/hostess for the visit. You may want to explain that your visit may be relatively short, or that in the middle of it you may need to take a walk or shift the person's focus to another activity. You may want to bring along a favorite album, book, or audiotape to help occupy the person.
• Think of a visit as a brief vacation. Unlike vacations that often involve changes in food or surroundings, visits to others' homes provide you with a sense of "normal" life, a link with the past, and a brief, memorable time with friends or family.
• Take pictures of friends and relative to preserve a happy memory for yourself and the person.
  

Visiting the nursing home

• Get acquainted with the staff. Ask questions about special problems or changes involving the person with Alzheimer's. For example, the Activity Therapist on staff may provide you with suggestions for new activities of interest to your family member.
• Get to know other residents. Your frequent visits to the nursing home bring you into contact with many residents who may not know you personally, but may appreciate your presence.
• Depending on your time constraints, you may want to get involved with other nursing home activities, such as becoming a member of a family council, a group which works with the nursing home staff.
• Prepare friends and family members for nursing home visits. Explain how the person's condition has changed and how long of a visit (s)he can handle. Also suggest simple activities such as giving the person a simple gift, putting lotion on his/her hands, or reading a poem or story aloud. A visit to the nursing home gift shop can be enjoyable.
• Ask visitors to leave a card or note when they have visited, or provide a guest book in the person's room that they can sign. Nursing home staff may not remember who has visited in your absence. If you know visitors' names and the times of their visits, you can make a point of extending a personal thank-you.
  

Making office visits

• Before taking the cognitively impaired person to a professional office - to see a doctor, for example - work with the office staff. Advise them that the patient has dementia, and explain that the person's attention span is short and that time spent sitting in the waiting room should be limited. Ask if you may wait in an empty room. Also ask staff about parking, distance to the building, and accessibility of stairs and elevators.
• Be assertive about appointment times. Based on the person's daily routine or "best times," insist upon a morning or afternoon appointment. If the staff knows the situation, they may be willing to give you an appointment when the office is less crowded or noisy. Consider calling the office before you leave the house to check if the doctor is on time.
• Never leave the person alone in a waiting room. Consider taking a third person with you who can drive and help keep the person occupied. It is helpful to offer extra reassurance to the person with Alzheimer's because (s)he is away from the familiar environment.
• Plan for possible waiting. Even if you plan ahead, you may have to wait longer than expected. Handle the person's hunger by bringing along nutritious snacks. Take a walk down the hall or to another floor of the building. Keep the person busy with a deck of cards or looking at a magazine. Don't worry if the person fidgets or paces. His/her anxiety is normal.
• Use common sense in preparing the person for the visit. Instead of providing an elaborate explanation, simply say, "We're going to see Dr. Jones today." If the person with Alzheimer's objects, avoid getting an argument by offering a positive suggestion such as, "I need your help in explaining things to the doctor."

By preparing friends to visit the family member with Alzheimer's in any setting, you can make the visit comfortable, enjoyable, and an important part of the life of your loved one and family friends. Remember to show your appreciation to friends and family for providing you support and for visiting with your loved one.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Cindy Ulm, Regional Delegate, Board of Directors, Alzheimer's Association, Indianapolis, Indiana.

Special thanks to the following Chapters of the Alzheimer's Association: Columbia Willamette, Dallas, Los Angeles and Northern California.

© 1992 Alzheimer's Disease and Related Disorder Association, Inc. All Rights Reserved

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Services You May Need

There are many types of services available to assist you throughout the course of Alzheimer's Disease. Although you may not need all these services immediately after receiving a diagnosis, it's important to identify what's available in your community. Call your local chapter of the Alzheimer's Association to find resources in your area.

Medical Services.

Families report they are most satisfied with a specialist who is well informed about Alzheimer's Disease. This may be a neurologist, geriatrician, psychiatrist or a family doctor who is experienced in treating people with the disease.

Legal Services.

Legal planning should begin soon after a diagnosis has been made. Planning should involve putting together documents that authorize another person to make health care and financial decisions, including plans for long term care coverage.

An attorney can explain issues related to durable power of attorney for health care and finances, living wills and trusts, future medical care, housing and other key considerations. There are elder law attorneys who specialize in issues affecting older adults.

If the person with Alzheimer's has the legal capacity - the level of mental functioning necessary to sign official documents - he or she should actively participate in legal planning.

Financial Services.

Important financial decisions will have to be made throughout the course of the disease. Attorneys, accountants and financial planners can help. If possible, include the person with Alzheimer's in the discussions. Financial assistance and health care benefits may be obtained through several government sources.

There are two types of entitlement programs that persons with Alzheimer's may apply for:

1. those that provide income, and
2. those that help pay for medical expenses.

Some of these include Social Security Disability, Supplemental Security Income, General Public Assistance, Medicare and Medicaid. Contact the government agency involved directly or your local Alzheimer's Association chapter for information.

Helpline.

Trained volunteers experienced in issues related to the disease staff the Alzheimer's Association Helpline. Helpline specialists are available to offer ongoing support, suggest tips for caregiving and provide specific information on resources that may help you.

Support Groups.

Your local chapter of the Alzheimer's Association also provides support groups for caregivers and family members throughout the disease process. In some cases, support groups may be available for persons with the disease. You can talk with others who are experiencing similar situations in a safe, nonjudgmental group setting.

Information.

You can find information on everything from diagnosis and treatment to caregiving and support groups through the Alzheimer's Association. Most chapters make available an extensive collection of brochures, books and videos. You can also find information on the Association's web site at http://www.alz.org/index.asp

As the disease progresses, you may need help with providing care. Care services generally fall into the categories of respite care, residential care and hospice. The Alzheimer's Association can assist you in determining what type of care is available in your community.


Respite Care refers to a short time of rest or relief. It allows caregivers a break from day-to-day duties and provides the person with Alzheimer's opportunities to interact with others. Three types of respite care most commonly available are:

• Day services. Programs in adult day centers can give the person with Alzheimer's an opportunity to socialize with others, exercise and engage in simple activities.
• Home care. Visiting nurses, home health aides, homemakers and volunteers can provide services at home such as bathing, dressing or companionship while you go out for a while.
• Residential Respite. Some hospitals, nursing homes and other residential facilities offer short-term stays of a few days or a few weeks.

Residential Care.

The type of residential care you may need will probably vary depending on the stage of the disease. Housing services are generally grouped in two categories:

• Assisted Living. Also known as board and care homes. Assisted living is a term for residential care settings that combine housing, personalized supportive services and health care. These setting offer more services than independent living but less than a skilled nursing facility.
• Skilled Nursing. Also known as nursing home care. This type of care provides an intermediate or skilled nursing setting for those who require more services. Some are designed to provide specialized care for persons with dementia.

Hospice Services.

Designed to help people near the end of life, hospice programs combine at-home and skilled nursing services. Today, more hospices are offering specialized programs for persons with Alzheimer's disease.

Other Support Services.

Other support services may be available from your local Department on Aging, Department of Health, senior citizens' agency, religious-affiliated service agencies and patient education departments of hospitals. Also, private physicians, social workers, nurses, psychologists and counselors may provide such services.


Additional Resources:

• If You Have Alzheimer's Disease: What You Should Know, What You Should Do
• Especially for the Alzheimer Caregiver
• Caregiver Stress: Signs to Watch for, Steps to Take
• Steps to Understanding Legal Issues: Planning for the Future

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

The Stress Diet

A lighthearted, fun look at the "perfect" diet to help
you cope with the stress that builds during the day.

Breakfast
1 half grapefruit
1 slice whole wheat toast, dry
8 ounce skim milk

Lunch
1 cup steamed spinach
1 cup herb tea
1 Oreo cookie

Mid-Afternoon Snack
Rest of Oreos in the package
1 pint Rocky Road ice cream
1 jar hot fudge sauce
nuts, cherries, whipped cream

Dinner
2 loaves garlic bread with cheese
1 large deluxe pizza
4 cans or 1 large pitcher of beer
3 Milky Way candy bars

Late Evening Snack
Entire frozen cheesecake (eaten from the freezer)

Rules for this Fun Diet

• If you eat something and no one sees you eat it, it has no calories.
• If you drink a diet soda with a candy bar, the diet soda cancels out the calories in the candy bar.
• When you eat with someone else, calories don't count if you don't eat more than they do.
• Food used for medicinal purposes never count, such as hot chocolate, brandy, toast, and Sara Lee Cheesecake.
• If you fatten up everyone else around you, then you look thinner.
• Movie-related foods, such as Milk Duds, buttered popcorn, Junior Mints, Red Hots, and Tootsie Rolls, do not have additional calories, because they are part of the entire entertainment package and are not part of one's personal fuel.
• Cookie pieces contain no calories. The process of breakage causes calorie leakage.
• Things licked off knives and spoons have no calories if you are in the process of preparing something.
• Foods that are the same color have the same number of calories. For example: spinach and pistachio ice cream, mushrooms and white chocolate.

NOTE: Chocolate is a universal color and may be substituted for any other food color.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

Twelve Things NOT to Say to a Caregiver

By Beverly Bigtree Murphy, MS, CRC, Caregiver
Courtesy of the Monterey County Chapter of Alzheimer's Association

It is time to discard the old clichés that have been imposed on us. I would like you to think about some of these statements before you use any of them. More important, I want you to challenge others when they say:

1. "The Burden of Caregiving."
   Webster's Dictionary defines "burden" as: "That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, "a beast of burden." The phrase, "the Burden of Caregiving," is used almost exclusively to describe the care of our elderly. Every time you use the word "burden" in relationship to caregiving, you are imprinting a negative image. Child rearing is a "challenge." The care of the elderly is a "challenge." Caregiving is a "challenge." We have to stop denigrating the care of our elderly as being something out of the ordinary. Our elderly deserve the same regard and love, as do our children who are just as dependent upon us for help.
   
   
2. "Let's face it, none of us want to be a burden to our children."
   None of us want to be a burden to anyone. We all hope to die without needing someone else to care for us. And while this is a universal desire, the fact remains that few of us will have that luxury. Most of us will need to be tended to by someone else before we die. Our ultimate hope is that we will not be diminished in the eyes of those who decide to help us.
   
   
3. "No one should have to sacrifice their lives for another."
   Caring for another human being is about unconditional love. It is not about being a patsy. Those of us who take on the challenge feel that it isn't a sacrifice in the negative sense of that word. Our care is about commitment and obligation. Whatever our reasons, they are ours, and they are not for anyone else to judge.
   
   
4. "Your family member would never want you to do this for them, they would want you to get on with your life."
   I actually heard this said to an 85-year-old man who had just put his wife of over 60 years in a nursing home. The support group leader failed to relate to the grief he was feeling and the comment she made only angered him. Besides, what does "getting on with your life" mean to an 85-year-old whose wife of 60+ years is still living? What does this comment mean to any of us who are caring for a family member? This statement is about justifying what feels like abandonment. It is not about comfort.
   
   
5. "It is so hard watching someone lose their dignity."
   Dignity is in the eyes of the beholder and has nothing to do with whether or not a person can dress, feed or toilet themselves. Those are simply tasks. They are not a measure of a person's worth as a human being.
   
   
6. "You will want your children to remember their grandparent as they were, not as they are now."
   This is used as an excuse to justify not visiting a frail elderly member of the family. Generations of people before us shared the aging and death experience with their elders as a continuum of the life cycle without any known perversion of their memories during happier times. We respond to what we are told to expect. If there are no expectations for connection, none happen. However, vast numbers of us experience a sense of completion and peace by being able to share the last days with a family member. Some of us learn to see it as a rite of passage, a necessary part of our personal growth. We also view it as our role in helping our family member meet their transition with dignity and grace.
   
   
7. "Isn't it time to put your person in a nursing home? How much longer are you going to keep them home?"
   I have heard this offered as a response to just about any question a caregiver can ask - from "Where do I get a wheelchair? My wife stopped walking last week and I've been carrying her around the house. I need help!" to "My husband keeps missing the toilet; can anyone in this support group help me figure out what to do?" It is as if the world at large thinks all you have to do is drive your person up to a nursing home and drop them off and voila! the care problems go away. They don't! First, those caregivers with a sense of a continuing connection with their institutionalized family member, their involvement is often magnified by the fact that the care has been transported to a "foreign" place. Second, quality nursing home care is expensive. The majority of caregivers facing Alzheimer's with a family member do not have the money, and they often don't qualify for the Medicaid entitlement. Nursing homes are not an option for the majority of caregivers, and it is not because they don't know they exist. Third, this question is rarely an answer to requests for options, information, tools, and respite, an exploration that should include examination of the home-care choice as well as the nursing home choice.
   
   
8. "Why visit him so much, he doesn't even know who you are anymore?"
   I maintain that what matters is that we know who they are. If you do nothing more than nurture and tell them you care about them, you have fulfilled your obligation as a human being. We don't wrestle with these issues in working with infants who will die, if denied nurture. We have learned that people in a coma benefit from the presence of their family members. Are our elders, particularly those with dementia, less needful of human contact, touch, and tender loving care? Loneliness is not something that disappears with old age.
   
   
9. "Don't feel guilty. You've done everything you can."
   Guilt is not the word to use. People deal with grief issues when they leave a family member in a nursing home. If these issues are explored, caregivers might find resolution to the decision they made. I believe if caregivers are given the opportunity to explore all the care options, there is less separation trauma when and if nursing home placement becomes the reality.
   
   
10. "You should get out more often."
    Isolation, lack of money, and loss of friends often leave the caregiver with nowhere to go. It is an easy solution that is often tossed off by well-meaning helpers who haven't stopped to recognize that unless the family member is taken care of, the caregiver is going nowhere. The advice needs to be given along with options about volunteers, respite opportunities and information on daycare.
    
    
11. "Enough about your family member, I want to know how you're doing."
    The primary caregiver and the family member become entwined in ways that are often not recognized or valued by outsiders. There is a deep and often very complex bond that forms between the caregiver and the family member. When well-meaning helpers exclude the family member in their attempt to focus on the caregiver's needs, it often serves to isolate the caregiver even more.
    
    
12. "You must be so relieved it's over." (Used after the family member has died.)
    A caregiver who has lived through a long-term illness with a family member is still going to experience mourning when the person dies. The grieving process they face may be different from those who face a sudden death, or the death of a child, but the loss is just as deep. To diminish this event, is to dismiss the effort they made in care as well as their connection with that person.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.