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