Sexuality

Sexuality

Alzheimer’s disease changes the functioning of a person’s brain. When that happens, the person’s sexual behavior can change. Some people may forget appropriate public behavior and undress or fondle themselves. Some may use vulgar words or act sexually aggressive toward a spouse or others. Still others may lose interest in sex altogether.

It’s important to remember that changes in sexual behavior are not reflections of the person’s character they’re symptoms of the disease. As a caregiver, it’s also important to get the support you need to deal with your own feelings about such behavior.

Understand causes of behavior

  • Get a medical evaluation for a person who shows either an excessive interest or no interest in sex.
  • Realize that sexuality and the need for touching are very human drives.
  • Explore the possibility that the person craves affection and affirmation.

Consider possible reasons for inappropriate undressing:

  • Time of day. The person may simply want to get ready for sleep.
  • Clothing that’s too tight.
  • Hot weather or an overheated room.
  • The person may need to use the toilet.

Consider possible reasons for sexual displays and inappropriate or aggressive advances:

  • Loss of inhibition due to changes in the brain.
  • Insatiable desire due to changes in the brain.
  • Misunderstood circumstances.
  • Mistaking someone for one’s partner.
  • Forgetfulness.
  • Boredom.

Consider the possible reasons for reduced sexual desire:

  • Physical illness.
  • Hormonal imbalance.
  • Side effect of medication.
  • Depression.
  • Sensing a partner’s emotional withdrawal.

Be matter-of-fact

  • Do not overreact or express shock.
  • Avoid becoming angry or arguing.
  • Don’t shame or ridicule the person.
  • Try gently reminding the person when a behavior is inappropriate.
  • Remember to be sensitive and reassuring. Acknowledge that masturbation feels good before distracting the person or gently relocating him or her to a private area.

Distract or redirect

  • Be aware of conditions that may provoke excessive sexual interest.
  • Firmly set clear limits for behavior.
  • Redirect the person to a meaningful or favorite activity.
  • Postpone. Tell the person, Later. Right now we must do . . .
  • Provide a reality check. For example, the daughter of a man who often mistakes her for his wife, always greets him by saying, Hi Dad.
  • Respond to feelings of rejection, loneliness, or a need for closeness with gentle talk, a caring pat or a hug. Establish a balance; overresponding may encourage unwanted sexual behavior.

Adjust to changes in desire

  • Come to terms with the knowledge that your sexual relationship will change.
  • Adjust to your partner’s excessive desire. Redirect the person to masturbation.
  • Consider separate bedrooms.
  • Adjust to your partner’s reduced desire. Get a medical evaluation for your partner.
  • Lack of desire could stem from physical problems or be a side effect of medication.
  • Retain a sense of intimacy by sharing touch and reminiscing together.
  • Prepare yourself for the time when your partner no longer recognizes you. Try not to take this change personally. It’s normal to feel lonely and rejected.
  • Know that it’s common, if sexual relations continue, for the caregiver to feel a sense of guilt.
  • Know that it may be possible to continue a caring sexual relationship if you take the lead.
  • Realize that it’s common for a caregiver to lose sexual desire because of the demands of caregiving, the changing role from intimate partner to caregiver, and changes taking place in the person’s personality.

Take care of yourself

  • Do what feels best for you.
  • Do not feel guilty if you are no longer attracted to your partner and want to end the sexual relationship. Find new ways to connect with each other.
  • Consider dating, if it feels right for you.
  • Know that there is no right or wrong approach.
  • Join a support group.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research.

Updated October 2004

 

Respite Care Guide

Finding What’s Best for You

21

Everyone needs a break. If you are a caregiver, you may need a break from caregiving tasks. If you have dementia, you may want a break from the daily routine and have the opportunity to meet others who share some of the same challenges. Respite care can help, by providing a new environment or time to relax. It can be for a few hours or several days or weeks depending on your particular needs and interests.

What is respite care?

Respite refers to a short time of rest or relief. It provides a break from the typical care routine allowing the caregiver some down time while the person with dementia continues to receive care from qualified individuals and has the opportunity to have different experiences.

An individual can receive respite care:

  •  From paid staff, volunteers, family or friends
  •  At home, a community organization or a residential care center
  •  For part of the day, evening or overnight
  • Occasionally or on a regular basis

Why use respite care services?

Some caregivers work or have other responsibilities in addition to providing care. Respite care can give a caregiver the time and assistance required to meet these personal needs.

  •  Respite care can provide the caregiver with:
  •  A chance to spend time with other friends and family, or to just relax
  •  Time to take care of errands such as shopping, exercising, getting a haircut or going to the doctor
  •  Comfort or peace of mind knowing that the person with dementia is spending time with another caring individual

The person with dementia is experiencing many changes and challenges, too, and may also need variety in his or her routine and social interactions.

Respite care services can give the person with dementia an opportunity to:

  • Interact with others having similar experiences
  • Spend time in a safe, supportive environment
  • Participate in enjoyable activities designed to match personal abilities and needs

What are the different kinds of respite care services?

There are a number of ways that respite care can be provided. Following are descriptions of five common types.

 1. In-home respite care

These respite care services are provided in the home to assist the caregiver and the person with dementia. Services vary in type and can include:

 Companion services

Help with supervision, recreational activities and visiting

Personal care services

Help with bathing, dressing, toileting, exercising and other daily activities

Homemaker services

Help with housekeeping, shopping and meal preparation

Skilled care services

Help with certain medical services or care

In-home aides can be employed privately, through an agency or as part of a government program. Be sure the aide and services are appropriate for your specific needs. Cost, level of training and specific services provided will vary among workers and agencies. Generally, Medicare does not pay for this type of help, but financial assistance may be available.

Some respite care aides have received training about Alzheimer’s disease and the unique needs of a person with the disease. It is important that the in-home aide is knowledgeable or at least willing to learn about Alzheimer’s disease and effective approaches to care.

2. Adult day centers

An adult day center provides care outside the home and is designed to meet individual needs while supporting strengths, abilities and independence. Participants have the opportunity to interact with others while being part of a structured environment.

Daily activities may include music, recreation, discussion and support groups. Staff may include a nurse, social worker and recreation or music therapist. However, staffing can vary across centers. If the person with Alzheimer’s requires medical services (i.e., insulin shots, help with medication, etc.) be sure to ask if staff provides medical assistance.

Many caregivers who work during the day find this type of center very helpful as they try to balance a job with caregiving duties. Hours of service vary at each center, but some are open from seven to 10 hours per day, five days a week. Some may even offer weekend and evening hours, and most centers provide a meal or snacks.

3. Informal respite care

Many times, a family member, close friend, neighbor or volunteer is willing to occasionally help out, giving the caregiver time to run to the store or just take a break. Caregivers should keep in mind people who have offered to help.

Put together a schedule of times when others are available. It may be in the evenings, on the weekends or on special occasions. This can allow the caregiver some down time while the person with dementia is spending time with someone else you both trust.

4. Residential respite care

Another respite care option is a stay in a residential facility overnight, for a few days or a few weeks. Overnight care allows caregivers to take an extended break or vacation while the person with dementia stays in a supervised, safe environment designed to meet personal needs. The cost for these services varies and is usually not covered by insurance or Medicare. Be sure to make a reservation in advance, as some centersmay not always have an available room.

Sometimes, a person with dementia may have difficulty adjusting to this new environment. Regular stays can allow the overall adjustment to become easier for everyone. Over time, the staff can become more familiar with the needs of the individual, and he or she will become more comfortable with the staff and the environment.

5. Respite care for emergency situations

Accidents, surgery or unexpected trips can create a need for emergency respite care. In case an emergency does come up, it’s helpful to have done research and planning ahead of time. Call around to agencies to find out which ones offer services when the need arises. Try out a service in a non-emergency situation and see how it works. Also, talk with people you trust including family, friends and neighbors about the possibility of asking for help in case of an emergency.

How to choose a respite care service

Once you’ve assessed your needs for type of care, skills, location and frequency, you can:

  • Select a service that best meets these needs
  • Prepare the aide and the person with dementia
  • Evaluate the service’s effectiveness or usefulness

In some areas, respite care options may be limited. Contact your local Alzheimer’s Association to find out about the respite care services that are available in your area, and talk with people in your community to gain additional information about respite care options. Then, you can call these services with specific questions or inquiries.

Describe your situation and explain what you would like from a respite care service. Ask questions over the telephone regarding qualifications, types of services offered, cost and hours of availability. The more information you receive over the phone, the easier it will be to identify which service is best for you. You will also be able to limit the number of services you interview or visit.

Selecting the respite care service

If you are selecting an in-home aide, arrange a time to meet with the person in your home. Ask plenty of questions to gain an understanding of his or her skills.

Ask prospective aides about their availability, training, background, care philosophy and experience with dementia.

Be specific about the needs and the characteristics of the person with dementia. If possible, it is a good idea for both the person with dementia and the caregiver to participate in the interview process.

If necessary, interview several aides to find the right person for your particular situation; don’t feel pressured to settle on someone who

Doesn’t make you feel comfortable. Do be aware, however, that if the home care aide is coming from a government program, your choices may be limited.

If you are selecting an adult day center, arrange a meeting with the staff and take time to look around. Assess your overall feeling about the environment. Look to see if individuals are in involved in activities and if the center looks clean.

Get a better idea of the center by attending a function there or talking with staff. Ask if they provide personalized care, and find out about both the people who work there and those who attend the center. Be direct about the needs and characteristics of the person with dementia, and find a center that is able to meet your needs.

If you are selecting a residential facility, you will be faced with additional considerations. Since you will not be around 24 hours a day to

observe care, it’s important to make sure that the environment and services will be a good fit for the person with dementia.

It is also important to see the care firsthand. Ask to take a look around and talk with the facility’s staff, as well as residents and families who use service. Again, examine the environment yourself to see if it’s clean, if residents seem content and engaged, to gauge your general sense of the facility.

Stop by one evening or weekend and see if the facility is any different than during the day. You may even want to make an unannounced visit.

For a complete guide of questions you may want to ask when selecting a respite care service, see Things to consider when choosing respite care on page 12.

Overcoming concerns about respite care

It’s normal to be apprehensive about trying something new. Some concerns you may have about using respite services:

Cost

You may be concerned about how to pay for services.

Look into financial assistance such as scholarships, sliding scale fees or government programs. Contact your local Alzheimer’s Association to learn what kind of financial assistance may be available.

Reliability

You may be concerned about the dependability of the aide or service.

Those who work for an agency or facility should be reliable and well trained, and are often certified. Ask each individual and facility about training and qualifications. If hiring someone independently, interview the person thoroughly and check references.

Guilt

You may believe that you should be able to do it all.

Seeking help does not make you a failure. It’s important to remember that respite services benefit the person with dementia as well as the caregiver.

Preparing the respite care provider

Whatever type or combination of respite care options you choose, you will want to familiarize the aide or staff to the needs and characteristics of the person with dementia. Be honest in your discussions. Establish a relationship and learn from each other. If necessary, define the specific tasks the respite caregiver should be responsible for.

Be sure the aide or staff gets to know the person with dementia. Provide a written history of the individual; show photographs; share stories and memories.

Use the Personal Facts and Insights form (in the Fact Sheets/Forms section on CareFinder at www.alz.org) to help the respite care provider get to know the person. Provide it as a quick reference for the aide when you are not available. When completed, it provides information about the individual, including:

  • Personality
  • Personal habits
  • Level of Cognition
  • Daily Routine
  • Communication Skills
  • Family
  • Mobility
  • Hobbies
  • Likes and Dislikes
  • Occupation

Preparing the person with dementia

The person with dementia will also need time to prepare for and adjust to an additional caregiver. Provide as much information as is appropriate.

Some people with dementia may initially resist new situations; to help with a smooth transition to respite care, the caregiver may say someone is coming over to help around the house or refer to a day center as asocial club or work. The service or aide may have valuable suggestions if the person with dementia is hesitant.

Evaluating the service

It is important to periodically evaluate the service you use. Many times, needs will change and a particular aide or facility may no longer be suitable. In addition, the service may suggest they can no longer meet your needs.

In either case, you will want to find a different service that can better meet your specific needs. If you do decide to change services, make a list of the limitations of the current service and compare it to other options.

When evaluating your current respite care service, consider:

  • Is the service meeting your needs?
  • What is working best?
  • What can be improved?
  • What do you need that your current service doesn’t offer?
  • Can you help the service recognize and address your needs?
  • If not, where can you find what you need?

Contact the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for more information on respite care options and how to evaluate what’s right for your situation.

Things to consider when choosing respite care

Use the following checklist when you are screening different respite care options to find out if the provider, service or care setting will meet your needs. If it’s helpful, make copies of this list and use it to take notes about the different care options you explore.

This list is not comprehensive, but may serve as a starting point for you to think of additional ideas, preferences and priorities.

Checklist for help in the home or home care provider

Offers the specific services you need

  • Companionship:visiting, supervision and leisure activities
  • Personal care: help with bathing, dressing, toileting and exercising
  • Homemaking: housekeeping, shopping and cooking
  • Skilled care: help with medication and other medical needs

Provider is

  • Able to communicate in the preferred language, if important
  • Trained in first aid and CPR
  • Trained in dementia care
  • Experienced in working with someone
  • With dementia with an agency, if important
  • Bonded (protects clients from potential losses caused by the employee), if important
  • Able to provide references available when you need them
  • Able to provide a back-up if they are sizable to manage your specific health and behavioral care needs (list below)

Checklist for adult day care center

  • Able to provide respite care
  • Convenient location
  • Convenient hours
  • Appropriate services and programming based on your specific health and behavioral care needs including:
  • Staff trained in dementia care
  • Affordable
  • Transportation available if needed
  • Meals and snacks provided
  • Able to dispense/monitor medications
  • Enrollment in Alzheimer’s Association Safe RetunŽ program strongly encouraged

Checklist for nursing home, assisted living or other type or residential care

Family Involvement

  • Families are encouraged to participate in care planning
  • Families are informed of changes in resident’s condition and care needs
  • Families are encouraged to communicate with staff

Staffing

  • Medical care is provided to the extent that it is needed
  • Personal care and assistance is provided to the extent that it is needed
  • Staff recognize persons with dementia as unique individuals, and personalize care to meet specific needs, abilities and interests
  • Staff trained in dementia care

Programs and Services

  • Appropriate services and programming based on specific health and behavioral care needs, including:
  • Planned activities (ask to see activity schedule; note if the activity listed at the time of your visit is occurring)
  • Activities on the weekends or during evenings
  • Activities designed to meet specific needs, interests and abilities
  • Transportation available for:
    • Medical appointments
    • Shopping for personal items

Environment

  • Indoor space that allows for freedom of movement and promotes independence
  • Safe and secure indoor and outdoor areas
  • Easy to navigate
  • Designated family visiting area

Meals

  • Regular meal and snack times
  • Appetizing food (ask to see the weekly menu and come for a meal)
  • Pleasant dining environment
  • Family and friends able to join at mealtime
  • Staff have a plan for monitoring adequate nutrition
  • Staff are able to provide for any special dietary needs
  • Staff provide appropriate assistance based on person’s abilities (for example, allow the person to drink independently, if able)
  • No environmental distractions during meal time (noisy TV etc.)

Policies and Procedures

  • Family and friends able to participate in care
  • Visiting hours
  • Discharge policy (learn about any situation or condition that would lead to a discharge from the facility)
  • Enrollment in Alzheimer’s Association Safe Returns program strongly encouraged

State Inspection Results

If the facility is licensed, ask for recent state inspection survey.  Results administrators are required to provide this information if asked.

Several things to note:

  • Report should be dated within the last 9–15 months.
  • Compare the number of deficiencies cited to the state average.
  • If a facility has received a citation in a particular service area, be sure to ask questions about this area when you visit the facility.
  • Beware of choosing a facility with a very high number of deficiencies compared to other facilities in the area and the state average.

(Adapted from National Citizens Coalition for Nursing Home Reform: Consumer Guide to Choosing a Nursing Home)

 

If the facility is a nursing home, go to the Nursing Home Compare Web site to learn how it compares to the national average at www.medicare.gov/NHCompare/Home.

When contacting provider or residential care setting, be prepared by having the following information available about the person seeking care:

  • Name and Social Security number
  • Physician’s name and phone number
  • Diagnoses, other health and behavioral care needs
  • List of medications
  • Insurance coverage including Medicare, Medicaid and long-term care insurance
  • Special care equipment required

 

Questions to ask after evaluating:

  • Does the service/program meet my needs? How?
  • Does the provider appear to be adequately trained? How?
  • Is it convenient?
  • Is it affordable?

 

Quick Tips

  • Good dementia care includes ensuring safety and meeting basic needs but it also means involving the person with dementia as much as possible.
  • Caregivers should aim to treat a whole person, not a patient.
  • When you look for a care provider, ask about special training in dementia care.
  • Find out how care providers are supervised and supported in their daily work.
  • A good long-term care facility should feel comfortable and homelike.
  • People with dementia may be unable to express their feelings in words and behaviors may speak for them. Care providers should try to understand a behavior’s cause and consider the best solution.

The Alzheimer’s Association, a world leader in Alzheimer research, care and support, is dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s.

For reliable information and support, contact the Alzheimer’s Association: 1.800.272.3900 | www.alz.org

This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association. S.2007 Alzheimer’s Association. All rights reserved. #0107006

 

Alzheimer-Personal-Care

Personal Care

Assisting the person with dementia with changing daily needs

28

People with dementia slowly
become less able to take care
of themselves.

At first, a person may need only
prompting or a little help, but
eventually caregivers will become
responsible for all personal care.

Loss of independence and privacy can be very difficult for the person with dementia.

Caregivers must be aware of their loved one’s reactions, abilities and fears to provide the necessary daily care.

30

The Alzheimer’s Association recommends
ways to assist a person with dementia
with changing personal-care needs:

 

1 Bathing

31Bathing is often the most difficult personal-care activity that caregivers face. Because it is such an intimate experience, people with dementia may perceive it as unpleasant or threatening. In turn, they may act in disruptive ways, like screaming, resisting or hitting.

Such behavior often occurs because the person doesn’t remember what bathing is for or doesn’t have the patience to endure such unpleasant parts of the task like lack of modesty, being cold or other discomforts.

To assist:

Prepare the bathroom in advance

Gather the supplies for bathing in advance, like towels, washcloths, shampoo and soap. That way you and the person can focus simply on bathing. Check the room temperature to make sure it’s not too cold.

Make the bathroom safe

To prevent falls, install grab bars on the wall and tub edge. Place non-slip mats on floors. Use a tub bench or bath chair that can adjust to different heights. Use only two or three inches of water in the tub, and test the temperature in advance to prevent burns. Never leave the person alone in the bathroom.

Help the person feel in control

Involve and coach the person through each step of bathing. You may need to experiment to find out if the person prefers tub baths or showers. Also, consider what time of day seems to be the best for bathing.

Include the person in the process

Be sure the person has a role in the steps of bathing. For example, have the person hold a washcloth or shampoo bottle.

Respect the person’s dignity

Some people may be self-conscious about being naked. Letting the person hold a towel in front of his or her body, in and out of the shower or tub, may ease this anxiety.

Don’t worry about the frequency of bathing

It may not be necessary for individuals to bathe every day. “Sponge baths” with a washcloth can be effective between showers or baths.

Be gentle

The person’s skin may be very sensitive. Avoid scrubbing, and pat dry instead of rubbing. You may want to install a hand-held shower to wash hard-to-reach areas.

Be flexible

Washing the person’s hair may be the most difficult task. Use a washcloth to soap and rinse hair in the sink to reduce the amount of water on the person’s face.

2 Dental Care

Proper care of the mouth and teeth can help prevent eating difficulties, digestive problems and extensive dental procedures down the road. However, brushing is sometimes difficult because a person with dementia may forget how or why it’s important to take care of his or her mouth or teeth.

To assist:

Provide short, simple instructions

“Brush your teeth” by itself may be too non-specific. Break down each step by saying: “Hold your toothbrush.” “Put paste on the brush.” Then, “Brush your teeth.”

Use a “Watch me” technique

Hold a brush, and show the person how to brush his or her teeth. Or, put your hand over the person’s hand, gently guiding the brush.

Monitor daily oral care

Brush teeth or dentures after each meal, and make sure teeth are flossed daily. Remove and clean dentures every night. Very gently brush the person’s gums, tongue and roof of the mouth. Investigate any signs of mouth discomfort during mealtime. The person may refuse to eat or make strained facial expressions while eating. These signs may point to mouth pain or dentures that don’t fit properly.

Keep up with regular dental visits for as long as possible

A dental care routine is essential for healthy teeth. Ask the dentist for suggestions or items that may help make dental care easier.

3 Dressing

Physical appearance contributes to a person’s sense of self-esteem. For the person with dementia, choosing and putting on clothes can be frustrating. The person may not remember how to dress or may be overwhelmed with the choices or the task itself.

To assist:

Simplify choices

A person may panic if clothing choices become overwhelming. Try offering just two choices of shirts and pants. Keep the closets free of excess clothing.

Organize the process

Lay out clothing in the order that each item should be put on. You may also hand the person one item at a time while giving short, simple instructions such as “Put on your shirt,” rather than “Get dressed.” Don’t rush the person. Haste can cause anxiety.

Choose comfortable and simple clothing

Cardigans, shirts and blouses that button in front are sometimes easier to work than pullover tops. Substitute Velcro® for buttons, snaps or zippers, which may be too difficult to handle. Make sure the person has comfortable, non-slip shoes.

Be flexible

If the individual wants to wear the same outfit repeatedly, try getting a duplicate of it or have similar options available. It’s all right if the person wants to wear several layers of clothing, just make sure he or she doesn’t get overheated. When outdoors, be sure the person is dressed for the weather. Offer praise, not criticism, if clothing is mismatched.

4 Eating

Proper nutrition is important to keep the body strong and healthy. Regular, nutritious meals may become a challenge for people with dementia. They may become overwhelmed with too many food choices, forget to eat or think they have already eaten.

To assist:

Make mealtimes calm and comfortable

Serve meals in quiet surroundings, away from the television and other distractions. Keep the table setting simple, using only the utensils needed for the meal. Avoid placing items on the table that might distract or confuse the person.

Offer one food item at a time

The person may be unable to decide among the foods on his or her plate. Serve only one or two foods at a time. For example, serve mashed potatoes followed by cooked meat.

Encourage independence

Make the most of the person’s abilities. Allow the person to eat from a bowl instead of a plate, with a spoon instead of a fork or even with his or her hands, if it’s easier.

Be flexible to food preferences

It is possible the person may suddenly develop certain food preferences or reject foods he or she may have liked in the past.

Be alert for signs of choking

The person may have trouble swallowing some foods. Guard against choking by avoiding foods that are difficult to chew thoroughly, like carrots.

5 Grooming

The person with dementia may forget how to perform grooming tasks, like combing hair, caring for fingernails or shaving. He or she may forget what the purpose is for items like nail clippers or a comb.

To assist:

Maintain grooming routines

If the person has always gone to the beauty shop or a barber, continue this activity. If the experience becomes overwhelming, it may be possible to have the barber or hairstylist make a  visit to the home. Allow the person to continue using his or her favorite toothpaste, shaving cream, cologne or makeup.

Perform tasks alongside the person

Comb your hair, and encourage the person to copy your motions.

Use safer, simpler grooming tools

Cardboard nail files and electric shavers can be less threatening than clippers and razors.

6 Toileting

Many people with dementia have loss of bladder or bowel control (incontinence). Causes include inability to recognize natural urges, forgetting where the bathroom is or side effects from medicine. Have the doctor rule out medical problems as the cause.

To assist:

Remove obstacles

Make sure clothing is easy to remove. Clear the path to the bathroom by moving furniture.

Create visible reminders

Posting a sign or picture of a toilet on the bathroom door may help the person find it more easily. Using colored rugs on the bathroom floor and colored toilet lids may help the toilet stand out.

Offer reminders

Encourage the person to go regularly. Look out for signs of agitation, like facial expressions or pacing, that may indicate the need to use the bathroom.

Monitor incontinence

Identify when accidents occur, then plan for them. If they happen every two hours, get the person to the bathroom before that time. Limit fluids in the evening or schedule bathroom visits in the middle of the night. Consider a bedside commode.

Consider incontinence products

Rubber sheets or incontinence pads on the person’s bed may help. Padded undergarments or adult briefs are another option.

Be supportive

Help the person retain a sense of dignity. Reassure the person to reduce feelings of embarrassment.

 

10 quick tips

Assisting with personal care

  1. Be Flexible – adapt to the person’s preferences
  2. Help the person stay as independent as possible
  3. Guide by using easy, step-by-step directions
  4. Speak in short and simple words
  5. Avoid rushing the person through a task
  6. Encourage, reassure and praise the person
  7. Watch for unspoken communication
  8. Experiment with new approaches
  9. Consider using different types of products such as large-grip toothbrushes or bathing chairs
  10. Be patient, understanding and sensitive

 

The Alzheimer’s Association, the world leader in Alzheimer research, care and support, is dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s.

 

For reliable information and support,

Contact the Alzheimer’s Association:

1.800.272.3900

www.alz.org

 

Return from Alzheimer Personal Care to the Alzhiemers Caregiver Tips Page

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Alzheimer Late Stage Care

Understanding Alzheimer Late Stage Care

39Providing care and comfort during the late stage of Alzheimer’s diseases

Alzheimer late-stage care can be a hard time for all involved.  The late stage of Alzheimer’s disease and related dementias may last from several weeks to several years. Intensive, around-the-clock assistance is usually required.

A person with late-stage Alzheimer’s usually:

  • Has difficulty eating and swallowing
  • Needs assistance walking and eventually becomes bedridden or chair-bound
  • Needs full-time help with personal care, including toileting
  • Is vulnerable to infections and pneumonia
  • Loses the ability to communicate with words

For the person with late-stage Alzheimer’s disease, it is important to focus on preserving quality of life and dignity. The person should always be treated with compassion and respect.

1. Body and skin

A person with late-stage Alzheimer’s disease can become bedridden or chair-bound. This inability to move around can cause skin breakdown, pressure sores and the freezing of joints.

To keep skin and body healthy:

Relieve body pressure

Change the person’s position at least every two hours to relieve pressure and improve skin moisture.

Make sure the person is comfortable and that their body is kept properly aligned. Use pillows to support arms and legs. To avoid injury to your loved one and yourself, see a health care professional about the proper way to lift and turn the person.

Keep the skin clean and dry

The person’s skin can tear or bruise easily. Use gentle motions and avoid friction when cleaning fragile skin. Wash the skin with mild soap and blot dry.

Check the skin daily for rashes, sores or breakdowns.

Protect bony areas

Use pillows or pads to protect elbows, knees, hips and other bony areas. If you use moisturizer on the

Person’s skin, apply it gently over bony areas; do not massage the lotion into these areas.

Prevent freezing of joints

Freezing of the joints (limb contractures) can occur when a person is confined to a chair or bed.

To maintain the person’s range of motion in the joints, carefully and slowly move his or her arms and legs two to three times a day. Do these exercises when the person’s skin and muscles are warm, like right after bathing. See a physical therapist to learn the proper method for range-of-motion exercises.

Call your local Alzheimer’s Association office to find a health care professional in your area.

2. Bowel and bladder function

A person with late-stage Alzheimer’s disease may experience incontinence for a number of reasons, including a urinary tract infection or fecal impaction. First, see the doctor to rule out any medical problems.

To maintain bowel and bladder function:

Set a toileting schedule

Keep a written record of when the person goes to the bathroom, and when and how much the person eats and drinks. This will help you verify the person’s natural toileting routine. If the person is not able to get to the toilet, use a bedside commode.

Eliminate drinks that have caffeine

Coffee, cola, tea and other drinks with caffeine tend to increase the flow of urine.

Limit liquids before bedtime

Limit liquids at least two hours before bedtime, but be sure to provide adequate fluids for the person to drink throughout the day.

Use absorbent and protective products

Adult briefs and bed pads at night can serve as a backup to the daytime toileting schedule.

Monitor bowel movements

It is not necessary for the person to have a bowel movement every day. If the person goes three days without a bowel movement, however, he or she may be constipated. It may help to add natural laxatives to the person’s diet, like prunes, or fiber-rich foods, such as bran or whole-grain breads.

3. Food and fluids

Everyone needs to eat nutritious foods and drink enough fluids to be healthy. But a person with late-stage Alzheimer’s may have trouble swallowing, which may cause food or drink to be breathed into the airway and lungs. This can lead to pneumonia.

To help the person eat and drink safely:

Keep surroundings quiet and calm

Serve meals away from the TV and other distractions.

If the person can eat at the table, use a simple setting with a plate or bowl, place mat, cup and utensils.

Allow enough time for meals

Mealtimes may last longer now. Allow at least one hour for meals. Don’t rush the person or force him or her to eat. Find out what the person prefers. He or she may do better with smaller meals or snacks throughout the day rather than three bigger meals.

Comfortably seat the person

Make sure the person is in a comfortable, upright position. To aid digestion, keep the person upright for 30 minutes after eating.

Adapt foods to the person’s needs

Choose soft foods that can be chewed and swallowed easily. The person may prefer bite-sized finger foods, like slices of cheese, tater tots or chicken nuggets. If he or she can no longer eat solid food, mash or puree it in a blender.

Encourage self-feeding Sometimes a person needs cues to get started. Lift the spoon to your mouth as a reminder of how it’s done. Or get the person started by putting food on the spoon, gently putting his or her hand on the spoon and guiding it to the person’s mouth.

Assist the person with feeding, if needed Offer food or drink slowly. Make sure it’s all swallowed before continuing. Alternate small bites of food, with a drink. You may have to remind the person to chew or swallow. Don’t put your fingers in the person’s mouth; he or she could bite down.

Encourage the person to drink fluids

The person may not always realize that he or she is thirsty and could forget to drink. If the person has trouble swallowing water, try fruit juice, gelatin, sherbet or soup. Check the temperature of warm or hot liquids before serving them to avoid burns.

Thicken liquids

Swallowing problems put a person with dementia at higher risk for choking. To make liquids thicker, add cornstarch or unflavored gelatin to water, juice, milk, broth and soup. Or buy food thickeners at a pharmacy or health care supply store. Try pudding or ice cream, or substitute milk with plain yogurt.

Monitor weight

While weight loss during the end of life is to be expected, it may also be a sign of inadequate nutrition, another illness or medication side effects. See the doctor to have weight loss evaluated.

Know what to do if the person chokes

Difficulty swallowing can lead to coughing and choking. Be prepared for an emergency, and learn the Heimlich maneuver. Check for classes at your local hospital or community center.

4. Infections and pneumonia

The inability to move around in late-stage Alzheimer’s disease can make a person more vulnerable to infections.

To help prevent infections and pneumonia:

Keep the teeth and mouth clean

Good oral health reduces the risk of bacteria in the mouth that can lead to infection. Brush the Person’s teeth after each meal. If the person wears dentures, remove and clean them every night.

Clean all soft tissues of the mouth

Use a soft toothbrush or moistened gauze pad to clean the gums, tongue and other soft mouth tissues. Doing this cleaning at least once a day helps prevent tooth decay and gingivitis (inflammation of the gums).

Treat cuts and scrapes immediately

Clean cuts with warm soapy water and apply an antibiotic ointment. If the cut is deep, seek professional medical help.

Protect against the flu and pneumonia

The flu (influenza) can lead to pneumonia (infection in the lungs). That’s why it’s vital for the person as well as the caregivers to get flu vaccines every year to help reduce the risk. Also, a person can receive a vaccine every five years to guard against pneumococcal pneumonia (a severe lung infection caused by bacteria).

5. Pain and illness

Promoting quality of life means keeping the person with late-stage Alzheimer’s disease comfortable.

This becomes more challenging for the caregiver in this stage because the person with the disease has more difficulty communicating his or her pain.

If you suspect pain or illness, see a doctor as soon as possible to find the cause. In some cases, pain medication may be prescribed.

To recognize pain and illness:

Look for physical signs

Pale skin tone; flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body can indicate illness.

Pay attention to nonverbal signs

Keep track of the person’s gestures, spoken sounds and the expressions on his or her face (wincing, for example) that may signal pain or discomfort.

Be alert to changes in behavior

Anxiety, agitation, shouting and sleeping problems can all be signs of pain.

6. Personal connection

Because of the loss of brain function, people with late-stage Alzheimer’s disease experience the world through their senses. While you may not be able to communicate with the person through words, you can use many other ways to show the person reassurance and love.

To keep the personal connection:

Comfort the person with touch

Touch can be a powerful connector. Hold your loved one’s hand. Give a gentle massage to the hands, legs or feet. Give a kiss. Gently brush his or her hair.

Stimulate the senses

The person may find joy in the smell of a favorite perfume, flower, food or scented lotion. He or she may enjoy how it feels to stroke a beloved pet or fabrics with different textures. If the person can walk with assistance or uses a wheelchair, he or she may benefit from going outside to see a garden or watch the birds. You can also place the person in a spot where he or she can gaze out the window; avoid places where sunlight is too bright or too warm.

Use your voice to soothe

It doesn’t matter so much what you say it’s how you say it. Speak gently and with affection. Your tone can help the person feel safe and relaxed.

Play music and videos

Choose music your loved one enjoyed when he or she was young. Or use music related to the person’s ethnic or spiritual background. Videos can also be relaxing. Choose one with scenes of nature with soft, calming sounds.

 Read to the person

The tone and rhythm of your voice can be soothing, even if the person does not understand the words. Read a favorite story, poem, spiritual passage or blessing.

Reminisce and share

Fill a box with photographs and other items that represent the person’s interests, favorite activities or past work or military history. Have the person take out an item and share with him or her a story about the item. Examples include a family photograph from a favorite vacation, a holiday recipe card with a traditional family dish or a military medal.

7. Residential care

By the time your loved one reaches late-stage Alzheimer’s disease, you have likely been caring for him or her for many years. During this time, challenges may arise that lead to moving a person to a residential care setting.

The amount of time needed to care for the person is one reason for deciding to make the move to a new care setting. A person with late stage Alzheimer’s disease often requires 24-hour assistance. This round-the-clock care can be too difficult, especially for a sole caregiver.

If you are thinking about moving your loved one to a long-term care setting, call your local Alzheimer’s Association office. Our staff can answer your questions, refer you to support groups and help you through the transition.

Š 1996 Alzheimer’s Association. All rights reserved. Reprinted 2005.

 

This is an official publication of the Alzheimer’s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer’s Association.

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The Alzheimer’s Association, the world leader in Alzheimer research, care and support, is dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s.

For reliable information and support,

Contact the Alzheimer’s Association:

1.800.272.3900

www.alz.org

10 Quick Tips

Caring for a person with late-stage Alzheimer’s disease

  1. Focus on what the person can still do and enjoy
  2. Learn how to safely lift and move the person
  3. If the person refuses to eat, find out why
  4. Use a bendable straw to help encourage drinking
  5. Ask the doctor if a food supplement is needed
  6. If the person is losing weight, contact the doctor
  7. Get help from family and friends or professional home care nurses or aides
  8. Encourage the person to interact with loved ones
  9. Use sights, sounds, smells and touch to communicate
  10. Treat the person with compassion and respect sensitive

This article provides guidance, but is not meant to replace doctors’ advice. Consult your doctor about any changes in condition or other similar concerns.

Alzheimer-Incontinence

Incontinence

Many people with dementia have loss of bladder or bowel control (incontinence). Causes include inability to recognize natural urges, forgetting where the bathroom is or side effects from medicine. Have the doctor rule out medical problems as the cause.

Causes of incontinence

If a person with Alzheimer’s has recently started to lose control of his or her bladder and bowels, the first and most important step is to determine the possible causes.

Consider the following:

Medical conditions

  • Urinary tract infection, constipation or a prostate problem.
  • Diabetes, stroke or a muscular disorder such as Parkinson’s disease.
  • Physical disabilities that prevent the person from reaching the bathroom in time.

Medications and diuretics

  • Sleeping pills and anxiety-reducing drugs may relax the bladder muscles.
  • Drinks such as cola, coffee and tea can act as diuretics; a diuretic increases urination.

Environment and clothing

  • Make sure the person can find the bathroom.
  • Remove obstacles, such as furniture, in the path to the bathroom; make sure the path is well-lit.
  • Provide clothes that are easy to remove.

Dehydration

  • Don’t withhold fluids. This could cause dehydration, which could lead to a urinary
  • act infection and increased incontinence.

Understand

  • Bladder and bowel accidents are embarrassing. Find ways to help the person keep his or her dignity. For example say, Something spilled on you instead of saying, You wet yourself.
  • Be matter-of-fact; don’t scold or make the person feel guilty.
  • Respect the need for privacy as much as possible.

Communicate

  • Encourage the person to tell you when he or she needs to use the toilet.
  • Watch for nonverbal cues such as restlessness; making unusual sounds or faces; pacing; sudden silence; or hiding in corners. These cues indicate the need to use the toilet.
  • Use adult words, not baby talk, to refer to using the toilet.
  • Learn the person’s trigger words or phrases for needing to use the toilet. The person may use words that have nothing to do with the bathroom (i.e., I cannot find the light), but to that person, it means going to the bathroom.

Make it easy to find and use the toilet

  • Keep the bathroom door open so the toilet is visible.
  • Put a picture of a toilet on the bathroom door.
  • Paint the bathroom door with a color in contrast to the wall.
  • Make the toilet safe and easy to use. For example, raise the toilet seat, install grab bars on both sides of the toilet, and use nightlights to illuminate the bedroom and bath.
  • Consider a portable commode or urinal for the bedroom.
  • Remove plants, wastebaskets and other objects that could be mistaken for a toilet.
  • Remove throw rugs that may cause a person to trip and fall.

Plan ahead

  • Observe and recognize the person’s routine toilet schedule.
  • Remind him to use the bathroom just before his or her usual time.
  • Try setting a regular schedule for toilet use. For example, help the person to the bathroom first thing in the morning, every two hours during the day, immediately after meals and just before bedtime.
  • Identify when accidents occur, then plan for them. If they happen every two hours, get the person to the bathroom before that time.

Follow up

  • Check the toilet to see if the person has urinated and/or moved his or her bowels.
  • Help the person wipe and flush the toilet.
  • Regularly wash sensitive skin areas and apply powder or ointment.

Monitor fluids

  • Limit the person’s intake of liquids before bedtime.
  • Cut down on drinks that stimulate urination such as cola, coffee, tea and juice.

Adjust and innovate

  • Choose clothing that is easy to remove and to clean.
  • Consider having the person wear padded undergarments or adult briefs.
  • Give the person plenty of time in the bathroom to empty his or her bladder and bowels.
  • Run water in the sink or give the person a drink to stimulate urination.
  • Rubber sheets or incontinence pads on a person’s bed may help keep fluid from soaking into the mattress.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research.

Updated October 2004