Caregivers Can Look Backward to Move Forward

Dementia is a scourge that can affect any of us; we are all susceptible as we grow older, and even if we do not get dementia, we may be called upon to care for a family member. The numbers are grim: Over 10 percent of Americans over the age of 65 have dementia, increasing to 33 percent by the age of 85.

I speak from personal experience when I discuss how frightening dementia can be. My wife Helen started showing signs of Alzheimer’s when she was 72, after we had been married for almost 50 years. Her downward journey took eight years. She was the first one to detect the signs, and at her suggestion, we sought out a neurologist. Mild cognitive impairment, we were told, is probably not going to get any worse. But then it did.

Her friends started to notice that when Helen couldn’t remember which apartment she lived in upon returning from a walk, she couldn’t remember which of her two daughters was the oldest. Then Helen started getting lost even in our apartment. After enlisting the help of home health aides, my daughters and I realized Helen needed to be in a memory unit and, at the end, in a nursing center, strapped into a wheelchair.

One of the best pieces of advice I received was from my friend Danny Kahneman, who had experienced the same journey with his wife Anne Treisman (she had vascular dementia, not Alzheimer’s). Danny told me to appreciate where Helen was at each stage because it was only going to get worse. Danny was right.

When Helen started getting lost in our apartment, I found myself wishing we were back at the stage where she had to write down the steps to take a bus or metro to familiar locations. When Helen needed assistance with her meals, I wished we were back at the stage when she could no longer cook the meals during family events, couldn’t work out the sequencing or preparations.

Finally, as Helen lay dying, the terrible sounds of a death rattle filled the room. Then Helen died, and my daughters, Devorah and Rebecca, had the same reaction: “I wish I could still hear that death rattle. I wish she were still with us.”

Rebecca told me a story about someone who was very frustrated with her husband, who seemed to be in the early stages of dementia, because he kept asking her to repeat things. Rebecca thought, if only we could dial back my mother’s condition to that same level. Rebecca wanted to tell the person to be less impatient, but didn’t bother because the woman wouldn’t understand.

How can you help someone understand? Telling isn’t enough. Danny Kahneman’s advice to me only rang true in hindsight, after Helen had died. I had tried asking Alzheimer’s specialists what to expect, and they were evasive, saying that everyone is different—true, but unhelpful.

Then I recently thought of a strategy that might help: seeing into the future. I may not have known what path my wife’s condition would take. What if I had visited a memory unit, spent a few hours or a day watching the patients? I wouldn’t know which one Helen was going to turn into, perhaps a blend of several. Yet I could see the range of possibilities; it was likely that Helen would fit in here, as she eventually did.

And then I could have returned to our apartment with a different attitude. Hopefully, I would have appreciated what I still had — “appreciated” in the sense of understanding but “appreciated” in the sense of being grateful for the capacities Helen still possessed. I would have known how temporary those capacities were, and might have been all the more grateful for them because they were temporary.

That’s a different mindset than the person Rebecca encountered. Not being impatient with what the spouse had lost but being thankful for what he still possessed.

My brother Mitchell, who has been a psychotherapist for over 40 years, has added some of his own speculations here. Mitchell finds that people seem angrier these days, more on edge, less patient, and less curious and generous in their interactions with others. If a person with dementia gets angry and insulting, their caregivers may respond by getting defensive and angry in return, treating the antagonism as if the person with dementia were lucid and was deliberately offensive. This is a natural reaction, even if it is not helpful, and even if it is not warranted. It will not be easy to respond kindly to an angry person with dementia. Yet maybe if we view that person headed for a memory unit, we might sometimes, just a little, admire their energy and verbal skills. We might admire their strengths and not take their abuse so personally. (To my surprise, Helen sometimes did get abusive and even violent with caretakers, but never with me.)

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A visit to a memory unit would have let me see into the future, bringing the present into a better perspective. Researchers such as Dave Snowden have discussed a “future backward” technique, and I think that technique can be valuable. Nevertheless, it is not easy to imagine a future state given the complexities of our situations. Visiting a memory unit would have made the future much more concrete.

I realize that some people will react negatively to my suggestion of looking backward. They might not be cheered up by the idea that things are only going to get worse, and who can blame them? I think your reaction will depend on your mindset and how open you are to finding positives in a grim, hopeless situation.

I know that a great deal has been written to help caregivers. For example, Brackey (2017) has published a wonderful guide, as have Mace and Rabins (2021). And I suspect that my memory unit tactic has already been described in the literature. I did not search the literature. Nevertheless, I just wanted to toss off a note about this technique as a means of encountering the future for all kinds of challenges, not just dementia, and using that encounter to appreciate what we have in the present. Dementia