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Caregiver Issues

Caregivers, whether they are paid, unpaid, family, friends or professionals, face many pressures and stresses. To take the best care of the Alzheimer's patient, you must take good care of yourself. Some ways to do this include the following:

Many caregivers become isolated when the patient requires a great deal of care. Isolation causes stress and can produce mental and physical health problems. Make sure you ask for help at all stages of the disease. Asking for help is not a sign of weakness: it's smart caregiving.

Impact of diagnosis on the family

Family members may have trouble accepting that their relative has dementia. Family members may also feel anxious and depressed and worry about legal and financial arrangements. It's important to remember that Alzheimer's disease impacts everyone in the family (not just the primary caregiver).

Common feelings family members and caregivers report:

What can be done about these feelings?

Don't deny them. They are important for letting you and other family members know your areas of strength and weakness. Seek assistance for the areas of caregiving you find most difficult. Find a supportive person or a support group to discuss feelings. If more help is needed, consult a professional (such as a psychologist, social worker or counselor).

Some suggestions in coping with particular feelings are:

Why involve family and friends?

Caregivers sometimes feel the need to keep the patient's disease a secret from family and friends. While you must use your own judgment and do what is comfortable for you, there are some good reasons for involving family and friends right from the start of the illness and keeping them involved.

How do you involve family and friends?

There are a number of ways to involve others. One, obviously, is to have private conversations. Another is to call a meeting of family and close friends. These meetings can be good ways to share information, feelings, and solve problems. Professionals are sometimes available to help conduct these meetings. Before arranging such a meeting think through:

When asking for help from family and friends remember to be specific and be direct.

Caregiving changes your life and can also change your circle of friends. Replace friends who are demanding and judgmental with people who can be supportive and understanding of your situation.

What long-term plans are necessary?

Long-term planning is important to good caregiving. Caregivers must make many difficult decisions over the course of the disease. Knowing what your choices are and having support available will make these decisions easier. When making long-term plans:

To prevent isolation and stress, make sure you use as many available resources as possible.

Your health

Your physical health often depends on your ability to get help with the burden of caregiving. Being the only one the patient depends on is not smart caregiving. If you develop health problems, and this happens to many caregivers, the patient will be without help. A common reason for nursing home placement is because the caregiver becomes ill. Some common health problems of caregivers include:

It's important that you take time for basic personal needs (such as exercise, proper diet, sleep, and time with friends). If your basic needs are unmet, health problems may develop.

Stress

There are a number of reasons why caring for an Alzheimer's patient is particularly stressful. In this section we will offer some suggestions for managing the stress of caregiving.

With an Alzheimer's patient, no matter what you do, or how well you do it, the patient will decline over time. As a result you will need to:

Caregivers must adjust to role changes in addition to the extra tasks of caregiving. For example, an adult child often becomes a caretaker for their mother or father and a spouse assumes extra burdens and tasks in the relationship. Keep in mind that:

Caregiving is a job without clearly defined goals. There is often no limit to how much you can be doing (and to how guilty you can feel about not doing enough). It is helpful to:

Caregiving will often reactivate long-standing interpersonal problems you may have had with the patient. Generally, the more troubled your relationship was with the patient before the disease the more difficulty you will experience in the caregiver role. Remember, you cannot change your history, you can only work on the present.

Different stages of the disease may create different stresses. In the early stages the predominant stress is often depression over the diagnosis of Alzheimer's and changes in the patient's personality, while in the later stages the predominant stress is usually the physical exhaustion of caregiving.

Caregiving adds unexpected responsibilities. Don't expect to accomplish what you did before caregiving. Think about decreasing some of your expectations (letting the house go a few extra days without cleaning, getting take-out meals, or not sending Christmas cards this year).

Caregivers may have made promises a long time ago, when the patient was healthy, that they would never send them to a nursing home. Today's reality may be quite different and these promises need to be reconsidered. Nursing homes can provide many positive services (varied staff, activities, and continual medical monitoring) that you might not be able to provide at home. Remember, choosing a nursing home does not mean you have failed.

Some other caregiving tips

Take time outs-a short break when you feel you're getting irritated. Remember, it's normal to lose your temper. Don't take the patient's behavior personally. Anger and stubbornness are common secondary symptoms of dementia. Try to respond in a matter-of-fact way and remember that the patient's behavior is not deliberate.

Don't assume the patient understands you. Often patients pretend to understand. Observe the patient's actions-what they do rather than what they say-to determine if they understand.

Don't forget to laugh, do things that are fun, and be creative with problem-solving. When one woman with early stage Alzheimer's began misplacing things, she and her husband created an imaginary houseguest named "George." When something was lost they would say, "Oh, that George, he's moving things around again!"

What can the patient still do well? Try to concentrate on their strengths rather than the abilities that have been lost.

Listen to how you sound. Does your voice sound too loud? If so, the patient could mistake this for anger. Are you tense? What are your facial expressions? Do your words and how you're saying them reflect how you feel and what you mean?

Maintain a consistent daily routine with the patient. Repetition and minimal changes will help to maximize their memory.

Provide lots of cues for the patient. Demonstrate and tell them how to do a task. Break tasks into small step-by-step units.

Don't try to reason or argue with the patient. Because Alzheimer's affects the patient's judgment and reasoning, getting into a logical argument about "what is right" will only frustrate both of you. Instead, when the patient is uncooperative or disagreeable, try changing the subject or suggest an activity.

Practice acceptance. The disease changes the person you knew. You cannot get back time for the companion, spouse, parent, you have lost and will continue to lose.

Support groups

The Alzheimer's Association sponsors a wide range of support groups for caregivers. Different groups have different focuses so make sure you talk to your local Alzheimer's Association about the best group for your needs.

Ask your local senior center if they offer lectures or classes on caregiver issues or aging concerns.

Try individual counseling if you are not interested in groups. It is important to have the support of someone who can listen to your concerns. Geriatric clinics in local hospitals, psychiatrists, psychologists, social workers, or mental health counselors can provide individual counseling.

Are there any books on caregiving?

There are a number of good resources available and more are published each year. Check with your local bookstore or Alzheimer's Association. Some well-known titles include:

Alzheimer's Disease: A Guide for Families, by Lenore Powell and Katie Courtice; Addison-Wiley Publishing Co., 1983.

The 36-Hour Day, by Nancy Mace and Peter Rabins; John Hopkin's University Press, 1981.

Alzheimer's: A Caregivers Guide and Sourcebook, by Howard Gruetzner; John Wiley & Sons, Inc., 1988.

Understanding Difficult Behaviors, by A. Robinson, B. Spencer and L. White; Eastern Michigan University, 1991. Available through your local Alzheimer's Association.

Your local Alzheimer's Association also has many helpful pamphlets free of charge. Some pamphlets, on specific topics such as choosing a nursing home, are $1.50.

Conclusion

We hope this manual was helpful. Please continue to seek help and information on both the local and the national level. New research with Alzheimer's patients is often underway. Your local Alzheimer's Association or university can tell you what projects are available in your area. Above all, don't lose hope and don't forget--caregiving is the most humane work of all.


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adrcweb@u.washington.edu
UW ADRC Director--Murray Raskind, M.D.
UW ADRC Education and Training Director--James Leverenz, M.D.
Last Modified: Friday, 09-Jan-2009 13:34:52 PST