Why People with Dementia Refuse to Do Things

Recently, while Marja, our son Kai and our grandson Otto were exploring the Oregon coast, we walked out to see the towering plumes of water created by the crashing surf at high tide. To get there we had to walk perhaps 50 meters over volcanic rock. The rock was uneven, of course, and we had to hop around the shallow pools of water from one island of rock to another.

It should certainly not have been a problem; nobody else seemed to be having trouble moving around.

I'm used to my mild difficulties with balance caused by my peripheral neuropathy. Now, unable to use my left arm (which was in a sling from my broken collarbone), my balance was even worse. All of this was exacerbated by the sandals I'd chosen to wear rather than the hiking boots I should have worn.

The cumulative impact on my sense of balance made it extraordinarily difficult to navigate around the small pools of water, and I almost fell several times onto the sharp surface of the rock. My flailing left arm and misstep into one of the small pools to maintain my balance made me feel foolish . . . and old!

However, I noticed something else. The landscape itself began to seem treacherous. I was aware that everyone else was navigating easily, but I noticed myself wondering: In such a dangerous place, how do they do it?

To a much smaller degree, I have noticed a similar phenomenon as a result of my cognitive decline. Certain aspects of the environment seem perilous in themselves.

I find myself checking out immediately from of any disagreement about what happened in the past, even when I'm quite sure of my memory. I defer to others' sense of direction or decisions about how to find our way to wherever we're going. I want to avoid Scrabble after noting the decline in my ability to play.

These are not disabling. Most of the time my sense of direction is perfectly serviceable. I only lose my way in new environments (like driving to the Napa Library this morning with Otto and his sister Madeline) and even then, it's only temporary. I still make some stabs at arguing with Marja about memory. I'm definitely going to play Scrabble with Otto and Madeline again.

Nevertheless, these situations create a certain apprehension.

I suspect that people with significant impairments experience similar (although much worse) anxiety. As their abilities wane, it's not just a question of avoiding those particular situations. It's also that the entire environment becomes more and more frightening and fear itself exacerbates their impairment . . . and their isolation.

There's a tendency, I suspect, for the caregiver to get a bit frustrated when the person with Alzheimer's refuses to do something that the caregiver knows that he really could do. Perhaps we underestimate the fear that makes their forays into the environment seem impossibly treacherous.

Editor’s Note: David’s journey with Mild Cognitive Impairment was chronicled in “Fade to Blank: Life Inside Alzheimer’s,” an in-depth look at the real lives of families impacted by the Alzheimer’s epidemic. His story continues on his personal blog on AgingCare.com.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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