What if I get Alzheimer’s in a few years?

A reader asks: How should I live my life if dementia is a real possibility in the near future?

At my age, a vigorous and healthy 74, I have less than six years to go until 80, after which the risk of dementia spikes. I have many stories to tell while I still have all my marbles. What's your advice for moving forward with purpose while minimizing anxiety about my neurological best-before date. My mother's family was riddled with Alzheimer's. -

Rona Maynard

That’s the question that writer

Rona Maynard

posed to me after I invited subscribers to submit a question on the topic of [b]old age¹. Her question grabbed me right away, especially because I share this anxiety. I want to approach Rona’s question from a few different angles, and speak to all of us facing this concern. 

For starters, my 93-year-old father has slowly-worsening dementia, so I have been trying to understand it better. Of course, his condition is a painful reminder that this could happen to me too. And I’m not alone. Various studies reveal that Gen Z and Baby Boomers fear cognitive decline² more than any other health concern about aging. As much as we fear cancer and perhaps more.

Why is this? Alzheimer’s means the loss of one’s personhood and one’s identity. That’s frightening to imagine. To me it sounds like a living death, and in some ways it is. I can also imagine the exquisite embarrassment of being perceived as incompetent if I began to slip into dementia, especially as I’ve been highly competent and quick thinking my whole life.

The wintry garden next to my 93-year-old father’s house. Note the moon gate in the brick wall. It makes me think of looking into the unknown.

The medical perspective

For a medical perspective on how to answer Rona’s question, I asked my retired physician husband,

Sam Harrington

, a few questions. The first thing he noted is that getting Alzheimer’s is quite unpredictable. You would have to have some kind of marker, a proven genetic predisposition, to be certain this was on your horizon. For that you would need to be tested by a neurologist. 

The second thing he told me is that Alzheimer’s is a type of dementia with a predictable pattern. It tends to follow a steady, relentless decline, although the timeline is variable. There are other kinds of dementia that don’t follow that pattern. I asked Sam about dementia in the very old. Cognitive decline is part of getting old, he said. It can be mild or severe and varies from person to person, from family to family. 

One specific action he recommended, if you are concerned about dementia, is to create what is called a Progressive Advance Directive³. In such a health care directive, you specify that as dementia advances you reduce or decline medical treatment. For example, if you can no longer recognize your family members, a sign of advanced dementia, you can refuse all medical treatment. You establish DNR (Do Not Resuscitate) status at whatever stage you want. The point is that you think ahead before you are in an incapacitated state.

Often, taking any kind of action allays anxieties; neurological testing and/or a Progressive Advanced Directive could be a way of taking control, he suggested.

And beyond the scope of this article is the topic of MAID (Medical Aid in Dying), also called physician-assisted death⁴, which is legal in an increasing number of states in the U.S. The situation is different in Europe where euthanasia is legal in several countries. (If this topic is something that interests you, please let me know in the comments and I may write more about it in a future essay.)

I find Sam’s measured, logical responses reassuring. Even if, as a physician, he can’t fix everything he often makes me feel less anxious. I hope Rona and others reading find some measure of comfort from this too.

The practical perspective

I’ve just finished reading the first of a trilogy of books by Wendy Mitchell, a leading advocate in the UK for awareness and understanding of dementia. She was diagnosed with early-onset Alzheimer’s ten years ago, at the age of 58. Since then brilliant writer

anna wharton

has worked very closely with Wendy to co-author and ghostwrite her three books. Wendy, a blogger as well as an activist, was initially able to keep a written record that helped Anna recreate, in the first book, the actual experience of living with Alzheimer’s. Wendy’s number one message is that a diagnosis of dementia doesn’t mean the end of your life.

If my writing resonates with you, I’d love to have you as a paid subscriber. Your support helps me continue publishing work that matters, to you and to me.

As a paid subscriber, you can count on a deep-dive essay once a month, either a highly personal essay or Ask Debbie, like this one, in which I answer readers’ practical and existential questions about [b]old age. I deliberately keep my annual fee low.