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To contact Jacob H. Fox, M.D., call Don Modica at 312/942 5579.
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Coping with Alzheimer's Disease One Day at a Time Physicians need to reach out to Alzheimer's patients and their families
The family physician can play a key role in helping patients and their families deal with Alzheimer's disease, according to the director of one of the busiest Alzheimer's facilities in the nation.
"I think the family physician is the facilitator," says Jacob H. Fox, M.D., Jean Schweppe Armour Professor and Chairman of the Department of Neurological Sciences at Rush Medical College in Chicago, Ill. "I cannot stress enough the importance of the physician in giving permission to do what's in the patient's and family's best interest."
"I think we have to broaden our definition of whom we're caring for when we see an Alzheimer's patient," says Dr. Fox, who spoke today at an American Medical Association briefing. "We're not only caring for the patient, though of course, that's always our prime ethical responsibility. We're caring for a family unit."
Alzheimer's disease is a progressive degenerative disease that leads to memory loss, language problems, difficulty with familiar tasks, disorientation, behavior and mood changes, and other problems. About four million Americans have Alzheimer's, and about 14 million will have it by the middle of the next century, unless a cure or method of prevention is found.
Dr. Fox says it's very important to tell the patient what he or she is facing when a diagnosis of Alzheimer's is made. He says the patient rarely has many questions, but the family does. "They'll want to know what's going to happen, and what should they start planning for. Usually what I tell them is to take it one day at a time. For mildly impaired patients, matters such as power of attorney should be dealt with immediately. This allows the patient to participate in the decision as to who should be managing his or her important decisions." He also tells the family that very gradually, the things the person does for himself or herself will diminish.
According to the Alzheimer's Association, more than seven in ten people with the disease live at home. Dr. Fox says there are special challenges for those who live alone: Will they leave the stove on, for example, or leave the door unlocked, or get lost?
There are an estimated six million family care givers including spouses, sons and daughters, daughters in law, siblings and grandchildren of patients. Care givers are subject to physical, financial and psychological stress. Much of their time must be committed to the task of caring for the Alzheimer's patient.
Care giving can lead to fatigue, social isolation, emotional distress and family conflict. But on the positive side, care givers can also experience a sense of purpose and mastery, a fulfillment of commitment, closer personal ties and a renewal of religious faith.
Dr. Fox says reassuring care givers is one area where physicians can play a tremendous role: "We have the capacity to give permission to our care givers to do what they have to do. Nobody else has that authority. When we say it's okay, it's okay."
Care giver needs to "take over"
He says the two most important tasks for the care giver are keeping the patient active, and relieving the patient of responsibility for things that he or she now has difficulty doing such as driving or balancing a checkbook. He says physicians can help by pointing out the availability of services in the community, including home care and--where available--day care.
Since finding activities for the Alzheimer's patient is a major task, Dr. Fox recommends trying anything in which the patient feels comfortable and familiar. For some patients it may be continuing to work at a job, for others a familiar hobby, while for others such a simple task as folding laundry can provide a comfortable activity.
He points out that it is the family who must make accommodations for the Alzheimer's patient. "One of the earliest elements of Alzheimer's is the inability to learn new things, to change the way you are--it's the family that has to change. If there's something that upsets the patient, it usually doesn't do any good to try and tell the patient, 'Don't get upset.' The thing that has to be done is to try and get rid of the thing that's upsetting the patient, if at all possible."
Dr. Fox urges all families of Alzheimer's patients to contact their local chapter of the Alzheimer's Association. "Families are tremendously helped by being involved with the Alzheimer's Association. I think the support of people who are going through a similar problem is sometimes a key thing in allowing people to survive."
He reminds care givers to take care of their own needs, as well as the patient. "You have to develop a style of dealing with the patient that is comfortable and tolerable, and that almost always has to include some time off for the care giver."
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For more information: contact the AMA's Science News Department at 312/464 5374. AMA web site: http://www.ama-assn.org
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