Helping families plan life with Alzheimer's
October 1, 1997 3 minutes read
Helping families plan life with Alzheimer’s
Early-stage programs prepare for the road ahead
[Editor’s note: This is the second of a three-part special report on Alzheimer’s disease. In our September issue, we focused on improving the quality of life for Alzheimer’s patients. This month, we discuss helping families and patients cope with a new diagnosis, the problems of misdiagnosis, and the prevalence of depression in Alzheimer’s patients. Next month, we’ll look at the need for rural support programs and the benefits of alternative therapies.]
Patients and their families often view a diagnosis of Alzheimer’s disease as the beginning of a long journey into darkness. But one education and support program helps families set a brighter course down a difficult road.
The Alzheimer’s Association’s Cleveland Area Chapter has offered its early-stage program for the past two years. They’ve identified information needs that should help case managers work more effectively with Alzheimer’s patients and their families.
The four-session program begins with a question session. "We spend the whole first session simply identifying what the questions of the group are," says Casey Durkin, MSSA, the chapter’s family services director. Sessions are limited to 15 to 20 families, but the groups can be quite large. "We encourage all interested parties to come. For each patient, we might have a spouse, several children, other relatives, friends, and even neighbors."
"It’s often interesting to see the differences in questions asked by people," adds Sally Ollerton, LSW, senior program specialist. "Patients and spouses tend to focus on medical questions. They hope that this is a disease that can be cured, or fixed somehow. Children seem to focus on services. It’s a grieving process. The children begin to see themselves in the caregiving role. They want to understand the different services available and how those services might fit into their lives at this point."
After the first session, the questions are grouped together and answered by appropriate sources at each of the next three sessions, explains Lisa Hamer, MSSA, branch office coordinator. The second session, a panel discussion by patients and family members, helps place emphasis on the patient and family perspective. The third session, presented by a physician or nurse, covers medical issues. The final session includes any issues not covered by the panel or the clinician.
Of ethics and empowerment
Each session includes a breakout into parallel groups. "We provide time for people to meet with others in their same situation. Spouses talk to other spouses. Children talk to other children. Patients talk to other patients," Ollerton says.
There are always many ethical questions raised during the early-stage program, Durkin says. "When we solicit questions during the first session, we write them out on index cards and pin them to a board. It’s not uncommon for 40% or more of the cards to relate to ethics, such as disclosure and communicating information about the disease."
"Driving is a really hot ethical issue that always comes up. We believe that a diagnosis of Alzheimer’s alone is not a reason to take away the keys," Ollerton says. "All people with Alzheimer’s will stop driving but at different stages of the illness. In addition, many symptoms that often cause patients to stop driving, such as vision problems, can now be alleviated with drugs."
Alzheimer’s medications also present ethical dilemmas for patients and families. "It’s not always beneficial for individuals to function at a higher level," Durkin explains. "Newly diagnosed patients experience depression. As their self-awareness declines, their depression also declines. If the self-awareness returns while on medication, their depression also returns." (For a discussion of depression in Alzheimer’s patients, see story, p. 181.)
One issue the Cleveland chapter emphasizes is the importance of legal planning for families. "We push for an early start on financial and legal advice from an attorney that specializes in elder care," Ollerton says. Issues the chapter suggests case managers discuss with patients and families include:
• durable power of attorney;
• living wills;
• costs of nursing home care;
• end-stage issues, such as tube feedings.
"The person with the diagnosis needs to be included in these discussions. Many have an opinion on all these issues, and they need to be able to voice it while they can," Ollerton says. "When, down the road, the person no longer has the capacity to make these kinds of decisions, the family has the assurance that the person’s opinions were expressed."
Case managers should help early-stage Alzheimer’s patients protect their assets and maintain their independence, Durkin adds. "It’s about autonomy, empowerment, and respect for individuals."
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