Michelle, whose career includes more than a decade of working in the “memory units” of assisted living communities, recently joined the Boston area’s Visiting Angels” to advise staff, home health aides, and families on ways to care for people with dementia in their own homes. She brought that experience and significant knowledge to bear in addressing a stimulating Lunch and Learn session sponsored by O’Connell Law on September 20, 2016.
It is striking that more than 80% of Americans over the age of 50, when asked, regularly say that they want to remain in their “homes” as they age. Sometimes, she observed, “home” may refer to a place other than their current home, perhaps the ancestral home they knew as a child or somewhere else with which they have ties. Yet, too often, the “default option” when an elder becomes demented, is to place him or her in an institution. And, it may be a surprise, but the majority of people in nursing homes are not there because of physical frailty. Rather, they increasingly represent people with dementia, defined as a loss of cognitive skills and memory that can be caused by strokes, Parkinson’s and other diseases, Alzheimer’s or other factors.
Michelle described Alzheimer’s and most, but not all causes of dementia as irreversible and progressive. While there are no effective pharmacological cures for Alzheimer’s, serious research has shown that healthy diets (she recommended the MIND diet which combines elements of the better known Mediterranean and Dash diets, avoiding red meat, cheese, and sugars, emphasizing vegetables and fruit as well as a bit of red wine), daily exercise (to reduce anxiety, aid sleep, improve mood, and increase alertness), cognitive stimulation (centered on the person’s interests which might be music, art, or even flower arrangement), and socialization (whose principal role is to reduce isolation) slow the course of dementia.
Michelle’s passion for dealing with persons with dementia resounded during her talk. She is one of the few, so far, professionals to advise a home health agency on how to care for people with dementia in their own environments. She begins with functional evaluations of persons whose capacities may be declining, gathering information on clients’ background, environment (for example, lighting appropriate for their activities), habits and patterns, interests and hobbies, vocational histories, physical capacities, the resources of family and friends, and, of course, their cognitive abilities to design a care plan as well as establish a baseline to determine later rates of decline and the need for additional care.
Language is important for a variety of reasons. She often asks clients “how do you like to be addressed?” That produces individualized responses (such as: I don’t
respond favorably to people who address me as “sir” for example). Yet few of us take the time to ask such a vital question. Also, what may sound like gibberish may be the client’s earlier language; since as memory is lost, we revert to language we used as a child.
This led to a discussion of how the brain functions and why, at least in Alzheimer’s cases, the amygdala (a protected part of the brain that reacts to colors, emotions, and music) may be retrained over time to take over the functions of the hippocampus and other parts of the brain which when healthy manage language and reasoning. Michelle, who began her career working with John Zeizel, highly recommended his film “I Remember Better When I Paint” (that follows a woman almost totally isolated from the rest of the world who “came alive” when reminded of her earlier artistic career and the ARTZ program which arranges museum tours and screening of older movies both of which stimulate thought and pleasure among persons with dementia.
After evaluation, a care plan is developed that is “person-centered” rather than “patient-centered”. This often requires training care givers, both professional and family, so that the time they spend with someone with memory deficits, avoids judgment, emphasizes dignity, and is conducted in a way that is meaningful for that person. She provided the example of a veteran (“Alf”) of the Second World War who, almost without fail, used the Battle of the Bulge as his reference point for virtually all conversations. A skilled therapist realized that Alf’s recollection of that significant time in his life remained important and that one way to reach him was to derive lessons from his experience conducive to desired behaviors.
Finally, Michelle’s work requires her to train family and professional care givers in person-centered techniques. Notably, she prefers “therapeutic fiblets” to the frustrating and time-consuming habit most of us have in constantly “correcting” people with dementia. If our goal is to reduce anxieties and promote positive responses, when, for example, we are asked about why a departed spouse hasn’t been visiting, instead of explaining for the twentieth time that he or she died long ago (which sometimes triggers grieving) simply explain that you’re sure that the spouse “continues to care deeply for you.”
You don’t have to lie in many circumstances. Years ago I was entrusted with managing the affairs of a talented woman who experienced early onset Alzheimers. “Betty” lived alone (although people hovered in the background) and drove, frequently to professional meetings to which she was invited in recognition of her earlier intellectual contributions. Her deficits were disguised by innate grace and charm. But on one occasion, while driving home, her car stalled, she couldn’t start it again; a person driving behind her arranged for Betty to take a cab home after a tow truck took the car to a nearby garage. Betty called begging me to find out where her car was, see that it was
fixed, and then returned to her. I located the car on the second or third call, but told the garage to finish repairs before returning it to Betty. In giving Betty the good news that we had found her car, I also suggested that we meet the next day to discuss the incident. When she agreed, I called a local taxi cab company to arrange that it be “on call” for any errands Betty might need, etc. Before we met I gathered some information on the cost of maintaining the car vs. “on call” service. At the end of our meeting, Betty thanked me for demonstrating that it would be less expensive to sell her car and arrange for regular cab rides for all of her appointments and chores. And, then, with her particular grace, she thanked me for “conducting a good business meeting.” Contrast that with the horrible fights that occur between concerned family and a demented parent when a child demands that a parent turn over keys to his car. Preserving their dignity, as well as safety, is as important to people with dementia as it is to the rest of us.
Bill Brisk, O’Connell Law, 9/21/16
