Thursday, December 30, 2010

Dementia and accountability

We have a cherished family member in her late eighties whose cognitive challenges have never been fully diagnosed but are very much in evidence. Because we love her and wish for her to know joy and comfort when in our company, the practices of patience and kindness have become second-nature within the family circle. When she asks the same question four times in a short period of time, we answer that question four times. When she becomes stuck on a topic that makes her anxious, we divert her attention to a happier topic. We have learned, in other words, how to live with the reality of her dementia in a manner that does not diminish the quality of the time we share with her. Most of the time, at least.

Because we recognize the reality of her dementia, she sometimes gets a “free pass” on remarks that would be regarded as inappropriate in other circumstances. She was never one to bite her tongue when she had an opinion to express, and the changes in her executive function have only heightened her tendency towards bluntness. Almost always her remarks can be brushed aside with a laugh. But a month ago I was sitting with her when we learned that President Obama had needed stitches in his lip after a mishap in a basketball game. She clapped her hands in delight and exclaimed “Oh goody!”

She has always been a staunch Republican, but in the past would never have celebrated the pain or suffering of another human being, no matter how vigorously she disagreed with that person. Or at least would not have admitted that she did. I felt I had no choice: I called her on it. I told her that her Christian faith did not permit her to rejoice in the pain of any person under any circumstances. She accepted that statement and expressed regret for her reaction, then promptly forgot the matter entirely.

Was I being unnecessarily harsh or cruel? Was I wasting my breath? Was I refusing to acknowledge the changes in her brain that directly affect how she processes information and responds to it? Perhaps. But if we excuse friends and family members with dementia from all moral accountability, are we not guilty of stripping them of their very personhood, essentially saying that nothing they say or do matters any longer? It is a tricky question. Clearly some forms of dementia impact not only social inhibition, but even the empathic response that lies behind such virtues as kindness and compassion. Dementia leads some persons to become angry or cruel, with no control over these behaviors. We must recognize this reality and make allowances for it.

But if we view our friends with dementia as no longer having moral agency and accountability, are we not reducing them from a “thou” to an “it?” If our friends are no longer worthy of being challenged or corrected when a moral line is clearly crossed, are we still being a friend to them at the deepest level?

I do not pretend to have definitive answers to such questions, but I do not regret the challenge I issued to our family member. My goal was not to change her behavior. It was to seek continuity in our relationship, one that—even within very real disagreements about political matters in particular—has been rooted in a common religious faith and moral vision.

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