No cure for Alzheimer's yet, but there is help for managing it.
When there is the possibility that a loved one has Alzheimer's Disease, the first reaction may be denial. One looks, hopes and prays for another way to explain changes in the loved one's behavior. That early denial is reasonable because there are, indeed, other possible causes of confusion.
Some age-related memory loss is normal. Who hasn't gone purposefully to the kitchen, then stopped and asked, “What am I looking for?” More serious confusion can be caused by medication, depression and stroke. There are other kinds of dementia, in particular vascular dementia.
Alzheimer's is a progressive disease that destroys a person's ability to process information. It is diagnosed primarily by ruling out other causes for the troublesome behavior. An autopsy of a person who had Alzheimer's usually reveals the presence of “amyloid plaques and neurofibrillary tangles in the brain.” Picture clumps of sticky protein and a tangle of tiny fibers. The messages just don't get through.
Age alone does not cause Alzheimer's, but is a primary risk factor. After 60, the prevalence of the disease increases steadily. About 20 percent of persons over age 85 will have Alzheimer's. A history of smoking, diabetes and vascular disorders also increases one's vulnerability.
An inherited deviation in a gene has been identified as a risk factor. Having that gene, however, does not necessarily lead to Alzheimer's, and its absence does not guarantee immunity. There is a test to determine whether the gene is present, but it's used mostly for clinical trials. Dr. Robert Butler, of Mt. Sinai Hospital and the International Longevity Center USA, says, “It's expensive and not a good idea for the public at large because we don't have a treatment.”
Some Alzheimer's patients experienced limited recovery of memory after taking an anti-inflammatory drug. “Inflammation in the brain may be one causal factor,” Dr. Butler says, “and is being studied. But the results you may have read about were short lived. Immunotherapy also offers promise, but is far from ready for the public.” Another intriguing study is investigating a possible connection with diabetes. Some drugs do slow the progress of the disease in some people, but do not cure it.
Symptoms of Alzheimer's change as the disease progresses. In the early stage, there is a loss of affect. Responses may be vague and flat. A person has trouble with words and numbers. Routine tasks and going from one place to another may be confusing.
“Looking back, there were signs,” says Ruth Benedict, of Antrim, speaking of her mother-in-law. “Before Mom moved into an assisted living unit,” recalls Ruth, “being in her familiar apartment masked the confusion. But she wasn't bringing anything new into our conversations.”
Behavioral changes become pronounced as the disease progresses. The person becomes repetitive in activities and conversation. He or she may have something to say, but just can't find the words. Frustration and mood swings are typical. Tom Dunn, of Keene, recalls when his stepmother had Alzheimer's. “She was a wonderful woman,” he says. “But she became hostile. She was angry one day, and calm the next. We never knew what to expect.”
As the disease progresses, 24-hour supervision becomes essential. Simple tasks, such as getting dressed or brushing teeth, must be guided and often assisted. Judgment and short-term memory are gone.
Caring for someone with Alzheimer's is exhausting. The caregiver is always on duty. He or she needs time away, with temporary care provided by a respite care provider. An adult day activity program may help both the patient and the caregiver. The caregiver gets relief; the patient benefits from being with others in a familiar setting. Support groups for caregivers can help them learn from each other.
But sometimes the best, perhaps the only, solution, is placement in a long-term care facility. Many skilled nursing and assisted living facilities have programs for dementia patients, often called Memory Care Programs.
We visited two programs, differing in structure, yet sharing an approach that accepts each resident in the reality of his or her world. There is no attempt to force a resident into “today.” The result is almost always a reduction in difficult behaviors and an increase in cooperation.
“Join Their Journey” is the name of the memory care program at The Isle at Ledgewood, an assisted living facility in Milford. This is an Emeritus Senior Living Community, a corporation with facilities in 35 states. “We validate a resident's current reality,” says Program Director Leanne Buyck. “We join their journey. We respect their interests and often bring those interests into our activities.”
Each of the 16 residents has an apartment with private bath, furnished and decorated with personal items, to make the transition comfortable. The common space includes dining, activity and recreation space. Residents move about freely within secured space.
The hallway has several shallow alcoves, each decorated to appeal to the expressed memories and interests of residents. One has an American flag and a display of World War II memorabilia. Another has an attractive display of pocketbooks in styles of days gone by.
Buyck explained that, while meals are served on a schedule, a resident is not forced to participate. There are mini-meals at other times, and always healthy snacks are available. “Who hasn't occasionally preferred to skip a meal, or come to breakfast in your nightgown,” she asks.
“Journey” residents often join assisted living residents for concerts and other special events. A four to one staff ratio makes it possible to give the supervision that is needed.
We also visited RiverWoods at Exeter. RiverWoods is a not-for-profit Continuing Care Retirement Community. It was founded by two women in the Seacoast area who saw a need, put together a committee, then a board, and raised start-up money. Today, the two women are residents there. Three residents sit on the board of directors. Residents take part in many committees, including finance, resident concerns and health care review.
There are two communities on the RiverWoods campus, The Woods and The Ridge. Each has cottages, apartments, assisted living units, a wellness clinic, skilled nursing and long-term care units. Each also includes dining areas, common space, activities space, gardens and outdoor hiking trails. A third community, The Boulders, will open in June 2010.
All residents must be independent when they join a RiverWoods community. An applicant's physical and cognitive health is assessed to make sure that he or she can live independently. After becoming a resident, though, a decline in health or cognitive functioning will be accommodated within the community. A resident can move between levels of care without an increase in fee and without time limits on any level of care.
If the resident can no longer live independently, a move to assisted living will be made. Daily help with housekeeping, medication management, health and personal care and dining often makes it possible for a resident with dementia to function well in assisted living. A resident with Alzheimer's whose spouse is in independent living may be able to spend a couple of hours a day “back home.” She continues to take part in familiar activities, as she is able.
If the disease progresses to the point that a resident needs 24-hour supervision and a secured environment, he or she will move to a dementia unit within the skilled nursing program. At either level, the approach is to recognize and minimize the resident's anxiety, explains Carol Horton, senior vice president of Health Services. “We find that by re-directing an anxious resident, we can reduce troublesome behavior,” she says. “The whole community, including residents and staff at all levels, understands that cognitive decline is a fact of life, and rallies round the person who has dementia.” NH
This article appears in the June 2010 issue of New Hampshire Magazine