About twelve hours after I’d put up the previous post, I wished I could take it back (which was the first time that’s happened). I realized it was too simplistic and I expected readers to call me out on it. The author of Contented Dementia seems to be working from the same assumption that most of our culture does: People with Alzheimer’s are basically out of touch with reality and need constant guidance. The author explicitly states that it’s never too early to put these rules into practice. Well, I have Alzheimer’s and I, at least, want questions from others, realize my reality is incomplete, and want to be challenged on things.
So I’ve been surprised to have no negative comments or emails; in fact, I’ve had a number of caregivers very grateful for it. That’s meant I’ve had to reflect more deeply and with more nuance. What I’ve come to is that Contented Dementia can be a very helpful book for caregivers, but the advice needs to be re-interpreted.
Here again are the three rules with my re-interpretations.
Don’t ask questions.
This rule simply doesn’t apply to earlier stages of dementia. But we need to recognize that any question requires anyone to access previously acquired information. As dementia progresses and the memories and pictures gradually fade away, questions requiring memories that are no longer accessible may arouse considerable anxiety and fear. Once the particular pictures disappear, avoid those questions that depend upon them.
Properly understood, the second and third rules, far from being simplistic are actually important principles that I try always to follow in any interaction.
Learn from them as the experts on their disability.
If the last word is changed to from “disability” to “context,” this is just good advice for anyone. The person with whom I’m talking is the expert on the context out of which their thoughts and opinions arise. If I don’t understand something of that experience, I won’t even know what the person means by their words much less how to respond to them. I, for instance, am a political leftist and tend to favor big government to provide the institutions and services best provided by all of us acting communally (ie through government). Much of that opinion, however, is based on my 25 years of working with impoverished Americans. But if I’m talking with a person who pulled himself up by his own bootstraps, who had his business destroyed by government regulations and high taxes, and who knows only of poor people who have abused the system, then I need to know about his context if we’re going to have a meaningful conversation.
Mostly when I talk with people, I ask a lot of questions trying to understand where they’re coming from. I assume that what they’re saying makes sense in their context. That doesn’t mean I agree with them or vote with them, but it does mean I’ll be able to respect them and to live with them.
It’s the same in my conversations with people with Alzheimer’s. Unless I know their reality, my responses won’t make sense and we’re not likely to get along very well.
Always agree with everything clients say, never interrupting them.
This sounds ridiculous, but it is in fact what I try to do with everyone I meet. I can’t contradict the pictures that comprise their reality. In any conversation, I usually find myself fascinated by the context of another person’s experiences. And when the other person is interested in my reality, we can have wonderful conversations. Even when we come to different conclusions and, say, vote on opposite sides of the issues, I can’t disagree with their pictures. My response to the “big government” issue is often to tell my own stories of impoverished people I know or of living in Finland where “big government” clearly “works.”
It’s the same principle for people with Alzheimer’s. I’m not going to have much luck arguing with how they experience reality; it’s probably only going to make things worse. Helpful interactions, therefore, are going to come from entering into their world and responding to it, not contradicting it.
Contented Dementia does over-simplify, at times, but, understood properly, its recommendations still hold. Most helpful are the book’s many, many examples that build upon its basic understandings.