AAMFT Consumer Update

Alzheimer's Disease

Approximately four million persons in the U.S. have Alzheimer’s disease (AD). Alzheimer’s is a disease of the brain that causes progressive deterioration of brain cells. This loss of brain cells can result in a gradual loss of memory, confusion, difficulties with language, and increasing difficulty with performing everyday tasks like using the telephone or grocery shopping. People with Alzheimer’s can also experience changes in their personalities that may cause them to behave in ways that their families may not fully understand.

The Alzheimer’s Association has developed a checklist of ten warning signs of possible Alzheimer’s disease:

1. Loss of memory, particularly recently learned information.
2. Difficulty performing familiar tasks (e.g. using the microwave oven or preparing a meal.)
3. Problems with language. Forgetting the names for household items like toothbrush or computer.
4. Disorientation to time and place. It is normal to forget what day of the week it is, but getting lost in your own neighborhood or thinking that you have traveled back in time are the types of disorientation one should notice.
5. Poor or decreased judgment such as dressing inappropriately for the weather or giving away large amounts of money to telemarketers.
6. Problems with abstract thinking that have not been evident before, such as difficulty with balancing the checkbook.
7. Misplacing things. Everyone loses their keys, but putting them in the refrigerator is the type of behavior noted here.
8. Changes in mood or behavior, and rapid mood swings with no apparent reason.
9. Changes in personality, such as extreme suspiciousness or fear.
10. Loss of initiative, resulting in sleeping a lot more than usual or watching television for several hours at a time.

Diagnosing Alzheimer's Disease

If you have concerns about memory or other behavioral changes, either in yourself or a loved one, it is important to consult a physician. Many of the symptoms of Alzheimer’s are similar to other conditions that are treatable such as depression, drug interactions, or vitamin deficiencies. There are also other types of brain disorders that might be causing the problems. Early diagnosis of AD can help the family and the person with AD have time to make choices that will make the most of their quality of life. The best diagnosis for AD involves several kinds of tests, including both medical and psychological tests, that are used to rule out all other possible causes.

How might Alzheimer's affect the family?

Alzheimer’s disease affects the entire family. Visions of a happy retirement may be erased, and family members are often called on to perform new tasks and to take on new responsibilities. Because relationships of family members are usually based on family roles that have been maintained over many years, changes in these roles can lead to conflict and stress for all concerned. Family therapists, who are trained to work with the family as a unit, are well prepared to help families meet the multiple challenges facing them, including the following:

1)     Redefining of family roles and the resulting disruption of family routines. Families must often renegotiate roles as the person with Alzheimer's declines. Issues related to the ability of the person with AD to drive and handle finances are often two of the first areas that have to be addressed. Also, activities related to daily living such as cooking can be problematic for someone who has memory problems. Many families struggle with how to renegotiate roles without undermining the person with Alzheimer's and without overburdening a particular family member.

2)     Communication difficulties. Communication with the person with AD may be complicated by memory problems, repeated conversations, difficulty in finding the right words and understanding of words.

3)     Nursing home placement. Placement in a nursing home is an option that many families consider, especially as the disease progresses and when the roles of caregivers become too demanding. It is a major life change that disrupts the relationships established over many years of being together. Nursing home placement confuses and strains the ties of loyalty, commitment, justice, and kinship between partners, parents and children, and siblings. Family members often feel guilty and view the transition as a tragic event rather than as a natural step in providing help for the person with Alzheimer's.

4)     Challenges of providing day-to-day care. The caregiver often takes on added roles. Caregivers sometimes become isolated from family members, relatives, and friends as the demands of care increase. Day-to-day care of the person with AD may include challenging behaviors such as agitation, aggression, wandering, hiding things, and safety concerns (e.g., cooking and taking medications.)

5)      Dealing with grief. The person with AD and the family are dealing with multiple levels of loss, including loss of job, income, financial status and security; loss of health and functioning; loss of self-esteem (including independence, dignity, body image, self-control, and family roles, etc.); loss of self and memory, loss of intimacy; loss of communication and social life; and loss of a longed-for future.

How can a family therapist help?

Persons suspected of having Alzheimer's are being diagnosed more quickly than in the past. This early diagnosis can provide the person with AD and the family time to work through some of the issues related to the stresses of dealing with a very slow and devastating illness. Family therapists are prepared to offer interventions that can help persons with AD and their families navigate this difficult period and respond to the many changes within themselves and between one another before the progression of the disease prohibits communication.

Resources

1.     Official website of the Alzheimer’s Association (www.alz.org). This website is the most comprehensive and up-to-date Internet site on the topic of Alzheimer’s.  There are sections for the person with AD and for caregivers. Topics include: diagnosis, treatment options, and advice for caregivers. Resources such as the Caregiver Kit are also available.

2.     Davies, H. D., & Jensen, M. P. (1998). Alzheimer’s: The answers you need.  Forest Knolls, CA: Elder Books. Written for people in the early stages of Alzheimer’s and their caregivers.

3.     McGowin, D. F. (1994). Living in the labyrinth: A personal journey through the maze of Alzheimer’s disease. New York: Dell Publishing. The author writes of her experiences in the early stages of AD. Also available in large print and on audiocassette.  

    

       4.  Mace, N. L., & Rabins, P. V.  (1991). The 36-hour day: A family guide to caring for persons with Alzheimer’s disease, related dementing illnesses, and memory loss in later life. Baltimore, MD: Johns Hopkins University Press. A classic comprehensive guide to home care covering practical advice as well as specific examples. This book is readily available through the Alzheimer’s Association.

© 2002 by the AAMFT