Caretaker Burnout: Supporting Families of Patients with Alzheimer's Disease
Am Fam Physician. 1999 Nov 1;60(7):2165-2166.
A 45-year-old laborer lives with his aging mother, who has Alzheimer's disease. Recently, she has become increasingly agitated. She frequently awakens during the night and wanders, sometimes out of the house. She is easily led back to her bed, but 30 minutes later she's up again. The son fears if he weren't constantly vigilant, his mother could hurt herself, get lost or be run over by a car.
The son is desperate. He operates heavy machinery on his job and has caught himself falling asleep at work. His mother is home alone in the daytime, and he can't afford to hire anybody to supervise her. He has considered locking her in the house, but he fears that may be illegal and would be dangerous in case of a fire.
His mother has Medicare and Medicaid and is on a waiting list at several nursing homes, but no beds are available. He wonders about this because he has heard of other people who have been admitted to the same nursing homes even though they applied after he did. He has seen advertisements for day care but assumes they would be too expensive. He has a sister in a distant city but no other close relatives. His sister feels guilty, but she has responsibilities of her own. She says he should “just leave her at the hospital. They'll have to find a nursing home bed.” The son is a widower and his social life, once active, is practically nonexistent because he must stay with his mother all of the time—so access to help from friends is diminished by the very problem he needs help with.
The son is afraid for his own safety and health and literally doesn't know which way to turn. There is nothing physically wrong with his mother; in fact, she is remarkably healthy and has little excuse for hospitalization. The son comes to his family physician exhausted and distraught. He has had angry impulses and has feared he might hurt his mother. He even wonders if more help would be available if that happened. What advice can you give him?
The case study described above outlines a situation that is far too common in families dealing with Alzheimer's disease. Although challenging and stressful, the son's dilemma is not hopeless, as long as he receives appropriate support, guidance and direction. At the same time, his physician can play a pivotal role in connecting him to sources of information and support and in helping him maintain the health and well-being of himself and his mother.
First, the physician will want to ensure that an accurate diagnosis of Alzheimer's disease has been made and that appropriate treatment is being carried out, including an assessment of current medications. In some cases, the physician may feel more comfortable referring the son and his mother to a physician who specializes in care for patients with Alzheimer's disease. At the same time, the physician will want to be sure that the son has had a recent physical examination to ensure that he is not neglecting his own health.
Several of the son's immediate challenges may be the result of the way his mother is spending her days. She may spend a large part of her day sleeping, which keeps her up at night. Often, people with Alzheimer's disease need help organizing their days, including initiating activities or tasks. Providing structure to her day could have a tremendous impact.
Respite care, such as an in-home companion or an adult day center, is a way that the mother's days can have structure and, at the same time, her son can feel comfortable with how his mother is spending her day. The son should be told that some centers or programs have sliding scale fees or financial subsidies for families in need, as cost is a concern for him. He may even want to ask a neighbor to stop by or spend some time each day with his mother. A community-based program, like an adult day center, can be an excellent way to meet current needs while he waits for an available nursing home bed. However, if eligibility or acceptance criteria continue to be an issue, the son should be encouraged to contact the local ombudsman. Drastic measures, as suggested by his sister, are never appropriate nor are they a guarantee of immediate placement in a nursing home.
The mother's sleeplessness and her days alone are also leading to concerns about safety. The son may need to make modifications to his home, such as installing better lighting, locks and other safety devices.
Even with the safest environment, wandering can be a major concern in people with Alzheimer's disease. Although there is no way to predict when wandering might occur, there are ways to prepare for it. One way is to encourage registration of the patient in the Alzheimer's Association Safe Return Program. This is a nationwide program designed to help identify and return to safety persons who are memory-impaired. To date, the program has helped locate and return more than 3,900 persons to their homes.
Many of the son's recent concerns may be arising from a lack of information and support. With a referral to the local Alzheimer's Association chapter, he can get accurate information about Alzheimer's disease and local resources and learn about opportunities for ongoing support. Local chapters provide a variety of programs and services to help persons with Alzheimer's disease and their families. These include support groups, telephone helplines and educational programs. Many chapters also help with problem-solving and decision-making, or can make a referral to someone who can help. Other chapters offer innovative programs to meet the unique needs of caregivers, such as online support groups. For more information or to locate the nearest chapter, call 800-272-3900 or visit the association's Web site (http://www.alz.org).
If the son's angry thoughts become more problematic or if he acts on them, the physician will want to make a referral to a counseling professional. In any case, ongoing assessment of the situation is essential so that changes in care and treatment evolve to meet changing needs. Throughout the disease progression, the son may need different types of information and guidance, such as advice on dealing with care challenges, making decisions about residential care and planning for end of life. As someone who is viewed with great respect, the physician can give the son and his mother some of the support and information they need, and also refer them to others who can support them even more.
About the Alzheimer's Association
The Alzheimer's Association is currently designing national programs to help physicians meet the needs of patients with Alzheimer's disease and their families. Some programs include national symposia and exhibits, reference materials and education and outreach kits. For more information about national programs and materials available for physicians, contact Trisha Bartelt at 312-335-5194.
RESOURCESshow all references
1. Respite care guide: how to find what's right for you. Chicago: Alzheimer's Association, 1992....
2. Steps to enhancing your home: modifying your environment. Chicago: Alzheimer's Association, 1997.
3. Steps to getting a diagnosis: finding out if it's Alzheimer's. Chicago: Alzheimer's Association, 1997.
4. Steps to planning activities: structuring the day at home. Chicago: Alzheimer's Association, 1996.
5. McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan EM. Clinical diagnosis of Alzheimer's disease. Neurology. 1984;34:939–44.
November is National Alzheimer's Disease Month. This month was first selected by former President Ronald Reagan in 1983.
Please send scenarios to Caroline Wellbery, MD, at firstname.lastname@example.org. Materials are edited to retain confidentiality.
Copyright © 1999 by the American Academy of Family Physicians.
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