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In Atul Gawande’s latest (and possibly best) book, Being Mortal: Aging, Illness, Medicine and What Matters in the End, he often refers to dementia because it is unavoidably connected with aging. Perhaps I like this book even more than his others because I am, without a shadow of doubt, closer in years to my death than to my birth, and like any one of us, the older I get the higher is my chance of becoming demented. Alongside that is the increasing number of friends who might go this route. Normal aging is a fascinating topic for various categories of people: baby-boomers and everyone older than them; their adult children; and hopefully, health professionals who care for “older people.” In fact, normal aging is such an interesting topic that I will devote next month’s blog post to it.
This month, however, I will stick to creative rehabilitation, and a label like that suggests there must be a disorder to rehabilitate. Normal aging is by definition not a disorder, so can’t be rehabilitated (it can be improved though!). Many might think dementia can’t be rehabilitated either, as again by definition, dementia is a progressive decline of mental, physical, and emotional abilities. Yet, in ways not dissimilar to those strategies that seem to improve life for very old “healthy” people, it is possible to, in a sense, “rehabilitate” people in the early and mid-way stages of dementia.
As you will know by now if you have read my previous posts on creative rehabilitation, I believe that rehabilitation that includes family and friends of the person with the disorder, is more likely to be successful for all parties. This is especially the case with dementia; in the latter stages of the disease especially, family members need all the help they can get to help them cope with their grief for the loss of the mother or father they once knew and can now no longer see in the person who has become as dependent as a newborn and nowhere near as cute.
The important questions are these: given that the dementia is incurable and will keep getting worse, what does the person in the early or middle stages of dementia believe are the activities, abilities, or connections, that will give her or him some pleasure? Which ones are most important? How might it be possible to make these things happen, even if for only a short time? Obviously, to even get to this point, the person with dementia has to understand that they have the disease, and with every passing month they may have less control over what they can do. Their family has to be willing to listen to what they want now; not what they wanted last year. (This is also one of the most important lessons we learn about normal aging, when reading Gawande’s book; our desires change as we age, and at all ages, desires are very idiosyncratic. What makes one person happy is not enough for another.)
Health researchers in the geriatric field have studied this of course, because anyone can see that sitting inactive and silent all day in a chair in a room that smells of antiseptic, urine and despair, along with lots of other old people doing the same, the TV muttering away unwatched in the background, is a terrible fate. So all manner of things have been tried to stimulate some sort of activity: singing, dancing, being taken for walks and community events. All of these things probably do some good, and certainly make family members feel a little better (although these days it is usually the nursing staff and community carers who are organizing and doing the entertaining, not the family). We all know that memory rapidly deteriorates with dementia, and that memory for recent events and years goes first. This might simply be a consequence of the fact that early memories have been rehearsed more than recent memories and are therefore more firmly stuck in our brains. Whatever the reason, it seems to be true, and thus, if those memories seem to be good ones from the demented person’s point-of-view, why not encourage them? Familiarity of their surrounds is also important, so making their room (whether in a nursing hme or in their daughter’s home) as similar to a favourite room from a home they lived in when they weren’t demented, can only be helpful. Put photos from their past on the walls, and don’t throw out that ugly, too-big piece of furniture that they seem to like.
A friend of mine told me a lovely story not so long ago. His mother ihad declined to a point that she needed more care than he could give her, so they found a particularly nice nursing home where she had a big bedroom with large french doors opening out onto a patio and her own little garden. She had always been a connoisseur of fine things, and her son had, over the years, bought her back from his travels pieces of very valuable and delicate porcelain. This precious collection was kept in a glass-fronted, locked cabinet. So before she was moved into the nursing home, her son and his partner spent considerable time and thought on making her new room as “familiar” as possible. Their best idea was to put the cabinet in the room with all its beautiful china on show behind the glass doors. Because they wanted her to feel in control, they showed her where they had put the cabinet key; in the top drawer of her chest of drawers.
After giving her a few days to settle in, they visited her and the first thing they noticed was that the cabinet was bare.
“Mother, where is your beautiful porcelain?” her son asked, thinking that perhaps the staff had put it away for safety reasons.
“People were sneaking in here and stealing it,” said his mother, clearly annoyed. “I’ve hidden it.”
“Where?”
She pulled open the big drawers of her chest of drawers, and there it all was, stuffed higgledy-piggledy in the drawers. Her clothes, they discovered, had been stuffed in the bottom of the wardrobe to make room for the china. So while she was in the dining-room eating her evening meal, they took the porcelain out of the drawers and put it back on the cabinet shelves, hoping that with her poor memory she would not notice the change. (One of the pieces already had a chip in it.) She didn’t say a word when she returned from dinner, and they breathed a sigh of relief. Three days later, on their next visit, the cabinet was bare again. This went on for some weeks—putting it back in the cabinet, trying not to think about the plummeting value of each precious piece as the chips multiplied, and finding it back in the drawers on their next visit. Removing the key resulted in her becoming very upset. At last they realized they were fighting a losing battle. They could have taken the cabinet and the porcelain away and kept it safe, but as her son said, looking remarkably amused, it was her porcelain and if hiding it made her feel better, then so be it! What price a collection of objects, compared with his mother’s peace-of-mind?
I’ll close with an edited excerpt from a chapter in my book, Trouble In Mind, to illustrate the sorts of therapeutic strategies that are possible, especially in the early stages of dementia. LIke Alice in Lisa Genova's novel, Still Alice, and the film of the same name, Sophie was one of the very unlucky few diagnosed with early onset dementia. A journalist and radio talk-back host, she was diagnosed at only 51. Her early diagnosis and her relatively rapid acceptance of her condition (still a very difficult and painful process) made “talking” therapy a possibility.
After months of neurological and neuropsychological tests, Sophie was given the diagnosis. Early onset Alzheimer’s Disease. After the long week it took her to work through the shock of knowing for certain what she had suspected for months, she felt able to see me for her first therapy session. Initially Sophie attended with her Peter, her husband, but then she decided to continue weekly sessions alone. During these sessions, with my assistance, she wrote letters to her husband and to each of her children to be read after her death. She made a short audiotape recording for the entire family, made difficult by her word-finding problems, especially given her emotional state. With many stops and starts, however, she completed a very moving tape, which later became an important catalyst in the grieving and healing process for her family.
Once these tasks were completed, Sophie decided to have a session with her family, during which she discussed her wish to be placed in a hospice when she needed full-time nursing care. She also spoke about her wishes for her funeral and explained that she had written letters to be given to each of them after her death. This was a very positive session, after which the family members were able to talk at home with one another about what Sophie had shared with them. Sophie did not ask for further therapy sessions, but on her request I visited her at home from time to time.
In the period when Sophie was having her individual sessions with me, the other family members also attended sessions to talk about practical issues and concerns as well as to begin to work through their own grief. Her daughter, Diane, found Sophie’s decline particularly difficult, because it brought back memories of her grandmother’s dementia. All three of Sophie’s children had concerns, at first unvoiced, that they too would end their days demented. I discussed this fear with them in terms of statistics, emphasizing the many family members of AD patients who do not develop the disease; the massive research efforts going into finding the cause, a cure, and treatments for AD; the changing societal views and laws about euthanasia; and the many productive years the children had ahead of them before they need worry about the fairly unlikely possibility that they would also develop AD.
Sophie remained at home with her husband and three children. Peter reduced his hours at his law practice so he could spend more time at home, and family and friends agreed to a roster so that Sophie was never alone in the house. There was always someone there if Sophie needed them; wanted to talk, go out, or simply watch TV together. As she had requested in the early stages of her illness, she was placed in a hospice when she needed full-time nursing care. While at home she remained relatively easy to look after, and family members quickly learned ways to defuse potentially difficult situations. Sophie’s depressed mood improved as her insight decreased, and within a year of diagnosis she no longer experienced periods of depression. She often made inappropriate or insensitive comments, frequently forgot or confused her children’s names, and could not be left alone in the house for fear she would hurt herself or set fire to the house by leaving the stove on. The family continued to help her cook simple meals as long as she was able, since this gave her pleasure for a short time.
She sometimes became agitated for no apparent reason, and occasionally threw food or crockery if she did not like the food she was given. Her family didn’t argue or correct her but simply removed the offending food, led her to her rocking chair, placed headphones over her ears, and played her favorite music. Seventeen-year-old Matthew in particular spent many hours reading to her, playing simple card games of “snap” with her (letting her win most of the time), and accompanying her on walks. Sophie retained his face and name in her memory longer than any others. After much soul-searching, Peter returned to his full-time law practice after a year, but he continued to keep most evenings free for Sophie. As he said, this work routine kept him “sane” and gave him the psychological strength to cope with Sophie.
Sophie deteriorated rapidly once in the hospice, and within six weeks she was mute and could recognize no one. Matthew had a small family gathering to celebrate his 21st birthday three months after Sophie entered the hospice, and Sophie came home for the occasion. To an onlooker she might have appeared unaware of what was going on, but Matthew insists that when he said to her, “See, Mum, I knew you would stick around for my 21st,” she squeezed his hand and smiled at him. She died a month later.
The family came to four therapy sessions following her death and were greatly helped and comforted by the audio- tape and letters Sophie had left for them. Their grieving was already well advanced by the time Sophie died, and at the end her death came as a relief. Their support for one another was very strong, and they felt that as a family they had gained much of value from the quality time they had been able to spend not only with Sophie but with each other. Matthew is now a hospice nurse.
