Vol. 20 Issue 2
Planning for Alzheimer's Care
As individuals with Alzheimer's are living longer, they and their families need to plan for a decade of care.
Mrs. Johnson (not her real name) had no close relatives when she was diagnosed with Alzheimer's. Her early diagnosis meant she had a couple of years of independence before she would start needing supervision. But an assisted living facility, at $40,000 a year or more, would deplete her resources far quicker than the length of her prognosis.
Taking control of the situation while she was able, Mrs. Johnson made a series of pledges with her close friends. They would tell her when she was no longer able to drive, and she would listen. She made arrangements for durable power of attorney. As her diagnosis progressed, she found individuals to provide supervisory care in her home. In her last years, she had a caregiver living with her. Through 15 years of Alzheimer's, she was able to remain at home through her illness and without depleting all of her resources.
The Changing Face of Alzheimer's Care
Mrs. Johnson's story is a best-case scenario, says her former physician, Norman Foster, MD, director of the Cognitive Disorders Clinic, professor of neurology and research professor at the Institute of Gerontology at the University of Michigan Health System. As older Americans are living longer, many of them are living longer with Alzheimer's. And the costs, both financially and personally, are taking a major toll.
"I contend that Alzheimer's is the most costly illness that you can have," said Foster, who developed the first dementia clinic in Michigan. "On average, an Alzheimer's diagnosis will cost $250,000 out of pocket. The major costs are related to long-term care. This is a chronic disease and requires increasing amounts of supervision and assistance throughout the course of the disease. This is what families feel, in part because these nontraditional costs are often not covered by insurers."
Planning for the future, then, is critical if you or a loved one receives an Alzheimer's diagnosis. Thankfully, new research is making planning more accurate. Science has made early diagnosis more common, and predicting the progression of the disease more precise. With this new information, planning can be comprehensive and can prevent crisis situations from happening.
"Studies have been able to identify the course and cause of different dementias, so we know what to expect," said Foster. "Planning doesn't need to be based on intuition or physician experience, but on very good data."
But all this new information can only help you if you know it is there. Take the case of another of Foster's patients: Her daughter and grandchildren were her caregivers, all of whom worked during the day. Unable to care for the patient full time, they put her in an assisted-living facility. Their resources ran out while her impairments were still fairly mild, and they were forced to apply to Medicaid. Had they been more aware of their options, however, the patient could have gone to a much less expensive supervised day care program and returned to be with her family at night.
"Having accurate information and access is very empowering to families who are facing dementia or any long-term chronic disease," explained Kathleen O'Brien, senior vice president for program and community services at the Alzheimer's Association. "It is vital to make that information very accessible. Financial planning, legal planning, planning for physical care and supervision are vitally important."
"There are things all individuals should do to plan for the future, and are very important if a person develops a dementing illness," said Foster. A high priority should be naming an individual to exercise durable power of attorney, should you become incapacitated to the point of being unable to make your own care decisions. This scenario happens often in Alzheimer's.
One of Foster's patients did not name durable power of attorney. Now the patient's family members, unable to agree on the best approach to care, are fighting one another in court. Not only is the situation tearing the family apart, but it is delaying the commitment to a single care plan that is best for the patient.
Beyond choosing durable power of attorney, families also need to decide what contributions each member can make. Often one member may provide direct care while others provide financial support, Foster said. Whatever a family decides is the right equation for them, it is important that everyone becomes involved and communicates effectively to prevent crisis.
"You set up the long-term care system with as many pieces as possible," he continued. "In most [cases] one person will take responsibility. If you wait until that person gets burned out, you have a problem, but if you get everyone involved then each person can gradually increase the responsibility as the disease progresses. Families need to get together and say, 'What are we going to do now, and what are we going to do when this gets worse?' That equality allows each person to continue to do their part."
The average life expectancy after an Alzheimer's diagnosis is 10 years from the onset of symptoms. During the first two years the patient can maintain a high degree of independence. In the next three years can still perform most ADL but will require increasing amounts of supervision. In the last five years the patient will require more and more assistance in performing ADL.
"Only after eight years of symptoms are the majority of patients receiving institutional care," said Foster. "It is possible for 80 percent of the illness to be lived at home with increasing supervision and assistance."
To accomplish that, the patient's physician needs to partner with the family to access appropriate community resources. Those resources can range from day care to home care to companion care. Community organizations and facilities offer services to ensure patients' care, safety and quality of life.
The Alzheimer's Association, said O'Brien, is dedicated to connecting families to the available resources within their communities. The association has 81 chapters and more than 300 local offices which are connected with community resources. By calling the group's round-the-clock National Call Center at 800-272-3900, caregivers can access professionals who can provide information about the disease, support mechanisms and decision-making help as well as links to local resources.
The association's web site, www.alz.org, also provides extensive information and links to resources on legal and financial planning and more. Caregivers can also register their loved ones with Alzheimer's with the association's Safe Return program. This program maintains a national database of information, so that if an individual with Alzheimer's ever wanders away from caregivers he or she can be more easily identified and returned safely.
"Many of the [Alzheimer's Association's] local offices also offer educational programs that might be targeted to family caregivers, health care professionals, doctors or allied service providers," added O'Brien. For example, during her tenure as executive director of the St. Louis, MO, chapter, "we trained all the metermen for electric and gas companies, so that if they encountered individuals with Alzheimer's, they would know what to do. Having educated and well trained health care providers can make a significant difference in the lives of Alzheimer's patients."
Foster encourages OTs to learn more about Alzheimer's, especially about what they are able to expect from a patient based on the patient's specific diagnosis. The therapist can work with the physician to help the patient do as much as he is capable of. Conversely, if the patient is unable to do an activity in therapy that he should be able to do, it may be indicative of another problem the therapist can bring to the physician's attention.
In practice, Foster advises doing what OTs do best: helping Alzheimer's patients maintain their independence for as long as possible.
"An important thing to do is to be able to use an individual patient's strengths to compensate for their deficits or weaknesses," he said. "Knowing the cause of the disease is one step, knowing how that cause affects that individual is another. In Alzheimer's, memory loss is a key component, so with cues and guidance the patient is often able to do things for themselves."
For example, difficulty with dressing begins to occur as patients reach moderate to severe dementia, "but it is not all or nothing," Foster explained. First the individual may simply need help picking out appropriate clothes, something a caregiver can easily help with, as well as providing clothes with elastic or Velcro closures.
"Often family members find themselves too stressed to be patient with let the patient do things for themselves," he continued. "It takes a healthcare professional like an occupational therapist to look at this from the outside and give guidance. It can make an amazing difference both in terms of the caregiver's view of their burden and from the point of view of the patient who is much more satisfied."
Not only that, but by doing things for themselves patients are staying active, and physical activity is a vital component in managing dementia. Patients who are not physically active show more complications of their illness, include sleep disturbances and behavior disturbances. Some research also suggests that the disease will progress faster in sedentary patients.
When health care providers educate themselves, their patients with Alzheimer's and their families, they ensure that the patient will receive the best care.
"My experience is that families and friends and neighbors do wonderful things to try to keep loved ones at home as long as possible," concluded Foster. "We just have to provide them with the guidance of what to do."
For more information, contact the Alzheimer's Association at 800-272-3900 or www.alz.org. The association's annual education conference for health professionals is July 16-18, 2004 in Philadelphia.
Jill Glomstad is ADVANCE senior associate/online editor. She can be reached at firstname.lastname@example.org.