Alzheimer’s: Focus on the ‘Other Victim’

New Yorker Marion Roach, daughter of an Alzheimer’s disease victim and writer on the subject, had the catch phrase that essentially summed up what everyone else was saying: “When communication stops, the grief begins.”

Attorney Nancy N. Dubler agreed, saying that the patient’s right to know (of the disease and its ramifications) was one of six rights “which are no less applicable to Alzheimer’s patients than to others. Without that knowledge, a victim is disempowered. Without that knowledge, there’s no way the victim can make any informed consent (to the decisions the family will face).”

In Agreement

Also in agreement was Dr. Steven H. Zarit, associate professor of gerontology and psychology and acting director of the Leonard Davis School of Gerontology, Ethel Percy Andrus Gerontology Center at USC. He spoke about the care givers, the victim’s family or friends, and how “they do better when they get their questions answered.” This extended, he said, to involving the care giver in the treatment plan and communicating promptly to the family both the good and the bad things occurring in the patient’s behavior.

It was an all-day intensive seminar on Alzheimer’s disease, just one of several subjects examined in depth at the American Assn. of Homes for the Aging 24th annual conference this week at the Bonaventure. Of about 3,000 at the conference, representing 2,700 nonprofit facilities for the aged around the nation, more than 350 zeroed in on Alzheimer’s disease. These were people past the point of needing definitions, explanations and the emotional support which so often accompanies Alzheimer’s presentations.

Health-care professionals all, they well knew what Alzheimer’s was--how it’s been generally lumped with senility, but tends to hit people under age 65, a process of mental deterioration where patients lose their ability to remember, communicate, to reason and finally to care for themselves, all the while remaining physically strong and healthy. The cause of Alzheimer’s disease is not known. Nor is there a known cure.

The timing of the seminar was fitting. November has been declared by President Reagan as National Alzheimer’s Disease Month and seminars, films and projects designed to draw attention to the disease--which has only received public recognition in the last few years--are scheduled around the United States. In Los Angeles, the John Douglas French Foundation for Alzheimer’s Disease this week sponsored a two-day seminar on “Early Diagnosis in Alzheimer’s Disease” bringing together 40 research scientists. The Los Angeles chapter of the Alzheimer’s Disease and Related Disorders Assn. held its annual awards dinner Wednesday, honoring actors Shirley Jones, Len Cariou and Richard Kiley, Bristol Myers for its philanthropy, Rep. Ed Roybal (D-Los Angeles) for public policy, Dorothy Kirsten French for public service, Jim Segel for volunteerism and Dr. Lissy F. Jarvick for the research she has done in the field.

The approach to Alzheimer’s disease at the American Assn. of Homes for the Aging conference was less medical than pragmatic. What they wanted, these health-care professionals made clear, were some practical solutions to the reality that an increasing number of Americans are being diagnosed as having Alzheimer’s disease every year. It is estimated 2 million elderly Americans suffer from the disease. Moreover, with the significant increase in the human life span and the number of people who experience this longevity, experts predict that the incidence of Alzheimer’s disease will triple within the next 50 years unless a cure is found.

Despite a family’s best efforts to keep a victim at home, nursing homes almost inevitably are part of the final package. Alzheimer’s victims constitute 50% to 60% of the 1.3 million people in nursing homes, accounting for more than half of the $25 to $26 billion spent annually on such care.

Reluctant to accept Alzheimer’s victims because they tend to be difficult patients, requiring not so much medical care as constant attention, many nursing homes are virtually starting from scratch in determining how to attend to the particular needs of Alzheimer’s patients and their families.

Family ‘the Other Victim’

And families, contended speakers Zarit and Karla Griffin, information and referral supervisor for San Francisco’s Family Survival Project, are very much “the other victim.”

In fact, said Zarit, just because an Alzheimer’s patient has been placed in a professional facility, “the care giver’s burden doesn’t stop at the institution’s door. The care giver may no longer be involved round the clock, but they’ll continue to visit, sometimes long distances. There’s the stress of interacting with staff, plus the additional financial burden.

“One of our studies among wives who placed their spouses in an institution showed that the wives’ need for a social life increased afterwards.

“We suspect too that people have inappropriate expectations that once the victim is in an institution, all problems will be taken care of. And that’s not the case. The emotional aspects don’t end.”

Griffin reiterated this, noting that many care givers experience a sense of isolation. “There’s the stigma of the disease and also the stigma of placing someone you love in a home. There can also be a physical dehabilitation as a result of the other person’s illness,” she said.

One of Griffin’s care-giver clients had a stroke which she attributes to the stress involved in caring for her husband who has Alzheimer’s. “She’s always telling me, ‘I’m cheerful. But I’m not happy.’ And I think that’s typical.”

“In addition,” said Griffin, “many care givers feel anger. It can be directed inwardly at self, which results in neglect of self. Or anger at the hospital staff and that leads to staff burn-out or possible abuse of the patient. Some people direct their anger outwardly, appearing incredibly hostile. But if anger is directed towards the government, then we’ve seen it result in change. Something to think about is channeling the care giver’s anger into something exciting like social change. And we should understand too that it’s OK to be angry. Alzheimer’s disease is unjust.

“How can we direct anger positively?” she continued. “The care givers need information. Information is power. It’s a sense of control in a hostile situation. People need to know who’s responsible for care, where they can turn for responsible answers. They need reassurance and empathy. They need lines of direct communication. Staff should be taught how to relate to families. And that should be a top priority.”

Institutions, Zarit said, should give credence to the care giver’s burden--while being alert to the fact that what may be a burden for some people may not be for others. Much of this depends, he said, on the prior relationship between the care giver and victim, the care giver’s response to such Alzheimer’s symptoms as repetitive questions and accusations, and how much support the care giver receives.

“We need to understand the effects of this disease on behavior. The care givers will sometimes misunderstand why a patient does what he does. For example, the repetitive questions. The care giver tends to assume it’s done just to annoy him or because the patient is lazy or the patient could control it if he really wanted. The truth is the patient can’t remember he asked the question. We need to stress to the care giver that these problems occur because of memory loss and that the patient has forgotten he’s even asked the question because he has a brain disease.

“What we need to stress, too, is that just because a problem is caused by the disease doesn’t mean we can’t do something,” Zarit continued. “We have a problem-solving process. You identify the problem, like not sleeping at night (which often is caused because the victim is sleeping during the day), find solutions, select one, rehearse it, then carry it out.”

The problems, however, are not always immediate. If diagnosed early--though final diagnosis of Alzheimer’s disease can only be made through an autopsy of the brain after the patient has died--a victim has time: time to make decisions, time to get affairs in order. And it’s the right of the patient and the responsibility of the care giver to make sure that is done, Dubler said. She heads the division of legal and ethical issues in health care for the Department of Social Sciences at the Montefiore Medical Center, Bronx, N.Y.

Patient Inalienable Rights

Patients, she said, have some inalienable rights: the right to know, to grieve, to be supported, to plan for their assets, to consider a range of health-care options and to be permitted to participate in health-care research.

What too often happens, Dubler said, is “a conspiracy of silence. There are some physicians who never use the word cancer, for instance. They truly think their patients have no idea what they’re dying from.”

The right to know is particularly crucial, based as it is “on the pivotal concept that a patient is capable of decision making. In the last stages of Alzheimer’s disease, no. When they’re incontinent, curled up in the fetal position. But for some time before that, many can still focus in what I call their sedemented life preferences.

“After all,” she said, momentarily interrupting her train of thought, “what is competence? It’s a legal presumption. There’s nothing magical about competence. At one point, it was 21. Then when we were sending boys off to fight, it seemed ridiculous that they weren’t considered competent so we changed it to 18. All competence means is the ability to have a set of values and apply those values to a set of decisions. And with Alzheimer’s you don’t have to be competent at all times. You may not be able to budget a checkbook anymore, but you may still have strong feelings about health care, feelings about your family.”

Assessing the responsibilities of that person’s family is less defined.

Nevertheless, Dubler had some thoughts for the health-care professionals to consider, beginning with the suggestion that families be treated with gentleness--especially since “the family gets insufficient support regarding the patient’s rights.”

Beyond that, she said, “I believe it’s the family’s responsibility to confront the disease with the patient and to be honest with themselves and the patient. It’s their responsibility to be responsible. It’s also their responsibility to recognize self-interest as valid, and to plan for a viable continuum of their lives in the community after the patient’s death.”

If all this seemed a heavy load to lay on the health-care professionals, writer Marion Roach at least offered a positive word: that nursing homes could indeed provide relief both to the Alzheimer victims and their families.

‘No Freedom’

“Before my mother was in a nursing home, she had no freedom. She was always watched. She had no privacy. We protected her from the world and the world was protected from her,” said Roach, whose experiences with her mother are chronicled in the book, “Another Name for Madness.”

“My mother had a right to a less-restrictive environment. At home she was getting no stimulation. We had people who were paid to dress and feed her, but beyond that . . . Well, at home she didn’t recognize me. Two days after we placed her in a nursing home, she recognized me and initiated a conversation. At her nursing home, she is cared for, stimulated and clean. Her sedation was cut in half. She attends current events therapy, dance therapy.

“I never thought I’d say this, but I want my mother in a nursing home,” said Roach. “I want her to be able to utilize every shred of her consciousness. And for that, I thank you.”