I’ve just finished James Oliver’s Contented Dementia, a book that describes a teachable method for caring for people with moderate to severe dementia.
The emphasis is on reducing the “client’s” (Oliver’s word, even if it’s your mother) fear and anxiety by discovering the context to which they are responding and then entering into that context as completely as possible. Imagine our context as a series of pictures in a scrap book. If all the pictures are there, we respond out of “reality.” The primary “difference between the person with dementia and the person you used to know is a single disability: they can no longer store information [the pictures] efficiently” and must often, therefore, respond based on the few pictures that remain. So as the person with Alzheimer’s tries to respond to the question, say, “What did you have for lunch?” but can’t find the picture for today’s lunch, some other picture has to be chosen. And in that other picture lies the problem. But if the caregiver can discover the set of pictures from which the client is acting, problems can be avoided and wonderful opportunities for new life can arise.
Out of that understanding come three rules:
- Don’t ask questions. Almost any question requires the client to retrieve new information. If they’re unable to do so, they can become anxious and fearful.
- Learn from them as the experts on their disability. Assume that everything the client says or does has meaning within their world of limited memory and perception. If we don’t understand the pictures they’re acting from, their responses won’t make sense, but if we enter into their world with them and discover the meaning of their behavior, then we can act in a way that responds to their needs as they perceive them.
- Always agree with everything clients say, never interrupting them. First of all, disagreeing with clients requires them to access the pictures they no longer have, which can arouse significant anxiety. Second, it precludes our entering into their world, preventing us, the caregivers, from gathering information about their reality.
I noticed a simple example in Quartet, a movie about a nursing home for retired professional musicians. At the movie’s decisive moment, when they’re about to go on stage, the quarter’s demented member heads for the door because she “has to catch her train.” Two of the others try to dissuade her by telling her how important the moment is, pleading with her, reminding her how much they need her. But she becomes increasingly agitated and insistent on leaving. The fourth member of the quartet, however, recognizes what’s happening, enters into her world and tells her simply that she has plenty of time to catch the train.
My immediate reaction was that never contradicting the client is just enabling her disoriented behavior. But my reaction, I think, is based on my judgment that she has some control over the pictures that go missing and, that if I just insist she find them, she can. There’s too much of the parent in me: I shouldn’t let her “get away with it,” I think. It’s just plain dishonest and disrespectful of her, my judgment tells me, to pretend that her world makes sense. And I don’t want to look silly to others by entering into a farce.
My initial reaction, however, ignores the fundamental fact that she perceives her current-day world within pictures that I can’t see. The opera singer is desperately trying to understand what’s happening to her (the other members of the quartet are holding her back) in the context of her other pictures (the need to get to the train). They can help her make sense of her experience only by entering it, acknowledging its validity, and offering her a response that simultaneously satisfies both the “real” world and hers.
It is a remarkable book, detailing unique insights and their implications for the care of a person with moderate Alzheimer’s. I can imagine some point in my journey when I will appreciate a person who can join me in my world and see my pictures rather than insist I respond to pictures I don’t have.