Caregiving Guidelines for the Person with Alzheimer's Disease

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

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

Source: Lela Knox Shanks, 1994

Just the Facts and More: Bathing

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

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

Physical/Psychological Factors

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

Environmental Factors

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

Special Concerns

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

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

Action Steps

Have reasonable exceptions.

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

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

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

Prepare the bathroom in advance.

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

Gently prepare the patient for the bath.

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

Make the bathroom safe.

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

Take care in giving the bath.

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

Resources

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

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

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

Other Resources include:

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

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

Just the Facts and More: Dental Care

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

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

Action Steps

Take preventive measures.

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

Find a dentist you can trust.

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

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

Use patience and common sense.

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

Take special care of dentures.

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

Resources

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

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

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

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

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

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

Just the Facts and More: Dressing

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

Physical Problems

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

Intellectual Problems

Does the person remember how to dress?

Does (s)he recognize her clothes?

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

Environment

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

Other Concerns

Are you pressuring the person to get dressed quickly?

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

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

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

Action Steps

Recognize the importance of clothing and self-esteem.

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

Make it easy for the patient to make clothing selections.

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

Choose clothing that's practical.

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

Consider experimenting with various types of fasteners.

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

Pay attention to the feet.

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

Prepare for dressing.

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

Dress for ease and convenience.

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

Adapt regular clothes to the needs of the patient.

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

Adjust to the problems of incontinence.

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

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

Resources

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

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

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

Other Resources include:

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

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

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

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

Just the Facts and More: Holidays

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

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

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

Action Steps

Adjust expectations.

Discuss holiday celebrations with relatives and close friends. Call a face-to-face meeting or arrange for a long-distance telephone conference call to discuss major holiday celebrations. Make sure that family members understand the situation and have realistic expectations. By discussing past celebrations, you may be able to agree on how you will handle upcoming holidays.
Give yourself permission to do only what you can reasonably manage. No one can expect you to maintain every holiday tradition or event. If you have always invited 15-20 people to your home, consider inviting five for a simple meal. Also consider asking others to bring dishes for a "potluck" meal or to host the meal at their home.
You may wish to familiarize others with the situation by composing a letter that makes the following points. Here is an example:

"I'm writing this letter to let you know how things are going at our house. While we're looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.

"You may notice that _____ has changed since you last saw him/her. Among the changes you may notice are _____ . I've enclosed a picture so you know how _____ looks now.

"Because _____ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable. Please understand that _____ may not remember who you are and may confuse you with someone else. Please don't feel offended by this. He/she appreciates your being with us and so do I. Please treat _____ as you would any person. A warm smile and a gentle touch on _____'s shoulder or hand will be appreciated more than you can know.

"I would ask that you call before you come to visit or when you're nearby so we can prepare for your arrival. Caregiving is a tough job and I'm doing the very best I can. With your help and support, we can create a holiday memory that we'll treasure."

Involve the person with Alzheimer's disease.

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

Adapt gift-giving.

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

Try to be flexible.

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

Resources

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

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

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

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

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

Just the Facts and More: Hospitalization

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

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

Action Steps

Keep the person's best interest in mind.

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

Work with hospital personnel.

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

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

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

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

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

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

Before Admission

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

During the Hospitalization

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

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

In the Event of Surgery

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

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

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

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

Resources

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

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

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

Other Resources include:

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

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

Just the Facts and More: Incontinence

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

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

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

Medical Conditions

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

Stress

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

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

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

Medication

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

Dehydration

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

Diuretics

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

Environment

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

Clothing

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

Action Steps

Innovate.

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

Understand.

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

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

Communicate.

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

Plan ahead.

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

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

Change and adjust.

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

Simplify clothing.

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

Follow-up.

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

Control.

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

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

Resources

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

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

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

Other Resources include:

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

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

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

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

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

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

Just the Facts and More: Nutrition

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

Predictability

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

Poor Nutrition

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

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

Disease Progression

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

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

Action Steps

Watch out for danger signs and take action.

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

Monitor changes.

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

Prepare food for easier eating.

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

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

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

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

Use soft foods to assist the person.

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

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

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

Make knife-and-fork foods into finger foods.

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

Proceed with caution in using liquid supplements.

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

Work to make mealtime calm and comfortable.

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

Resources

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

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

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

Other Resources include:

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

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

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

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

Section 5

Caregiving Guidelines for the Person with Alzheimer's Disease