In dementia's crosshairs, women speak out

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Tim Mullaney
Tim Mullaney

Alzheimer's disease does not discriminate. Or so we've been repeatedly told — for example, when “Iron Lady” Margaret Thatcher died, almost exactly one year ago. But a report out last week suggests that Alzheimer's does discriminate, in a sense. It appears the disease picks on women.

One in six women who are older than 65 will develop the disease, compared with one in 11 men, according to the figures released by the Alzheimer's Association.

Furthermore, women are far more apt than men to become a primary caregiver for someone with dementia. Among those who hold down a job while providing care, 20% of women go from full-time to part-time, compared with 3% of men, according to the Alzheimer's Association report.

Along with announcing these statistics, the association launched a national initiative to “highlight the power of women” in fighting the disease. The website for this campaign provides a number of avenues to contribute, including research participation opportunities, upcoming events and, of course, a donation button.

But the centerpiece of the campaign is an invitation to “share why your brain matters” by writing a post of 130 characters or less that will then appear on the “My Brain” homepage. Many responses that I read were passionate and moving. However, it's understandably hard to answer such a big question in fewer characters than a tweet. This was driven home by a remarkable essay that appeared on Slate the same day that the Alzheimer's Association released its report. The essay, written by a woman who has dementia, essentially answered that question of why her brain matters — but she used more than 50,000 characters.

The author, Gerda Saunders, does not have Alzheimer's but rather microvascular disease. One of the merits of her essay is that it clearly explains that there actually are more than a dozen different recognized causes of dementia, even though “Alzheimer's” is often used as a synonym for “dementia.” This only makes the statistics from the Alzheimer's Association more staggering, if you consider that the Alzheimer's numbers don't even tell the whole story of dementia's prevalence.

Saunders also led the University of Utah's gender studies department until her dementia precipitated her retirement. So it's especially fitting that her essay appeared on the same day as the Alzheimer's Association report addressed gender. The essay very much reflects Saunders' academic background. For example, as her disease has progressed, she has staked out her identity through an act of “re-gendering” a famous male figure, Don Quixote. He is arguably the most famous fictional character who has something like dementia, and Saunders comes to see herself as “Doña Quixote.” She describes a trip to the library, during which familiar landmarks become distorted, as similar to Quixote's quests, in which windmills became giants to be slayed.

However, the essay is far from a feminist manifesto, and part of its great value is in how it sheds light on aspects of dementia that are true both for men and women. For example, she lays out some of the differences between Alzheimer's and vascular dementia — and also the similarities, which are numerous. For instance, the fact that the progress of the two conditions is measured using the same two scales, one measuring cognition and the other looking at activities of daily living. One of the most striking aspects of the essay, which took me by surprise, is how it shows that these two measures are not necessarily entirely in sync.

I realized I always had taken it for granted that as dementia progressed, one's degraded cognition would lead to difficulties in carrying out activities of daily living. Saunders' essay is a testament to how the disease development is not nearly so pat.

Saunders' erudition and eloquence are on full display in this piece. She weaves in repeated and complex allusions to the likes of Albert Einstein and Winston Churchill, and references a squadron of classical and contemporary scientists, journalists, philosophers and intellectuals. She also deploys complex sentence structures and highly sophisticated vocabulary. As I began to read, I thought, she must be in the very early stages of dementia if she is capable of writing at this level.

But no. As she describes in the essay, she has problems accomplishing such basic tasks as cleaning a kitchen counter, and she has speech problems that make it difficult for her to carry on conversations. She no longer drives, gets lost frequently and cannot follow the directions of a global positioning system. Her IQ has dropped more than 20 points from when she was in high school.

Saunders explains that her continued ability to write at such a high level is one of the mysteries of dementia, which sometimes leaves intact particular cognitive skills that have been practiced regularly and at a high level throughout someone's life. However, the effort it now takes for Saunders to produce essays is gargantuan, involving copious notes, deep dives into the thesaurus and a great deal of time.

Despite the effort it takes her to write, the essay still shows off Saunders' intellectual prowess, and makes it very clear “why her brain matters” to her. Saunders' brain has defined her sense of identity probably more than it does for most people, because she pursued a life of the mind in academia. Now, her IQ has gone from something she knew was “good about herself,” like her “tallness and good skin and ability to stay calm,” to something she has “acquired over time” and doesn't like, such as her “sagging jowls” and a limp from a foot surgery. 

Saunders might derive her sense of identity from her brainpower in a more profound way than many people, but it's pretty obvious that as cognitive deficits accumulate, they rob everyone of a sense of self. So, really, the question “Why does my brain matter?” might just be another way of asking “What makes me unique?” or “What does my brain allow me to contribute to the world?” Luckily for us, Saunders' brain is allowing her to contribute a vivid and informative description of what it is like for her “to dement,” to use her words.

It's a remarkable dispatch from a cognitive realm that remains deeply mysterious, despite being a future destination for so many men and, especially, women — unless current initiatives gain support and lead to actual breakthroughs, and aren't just exercises in tilting at windmills. 

Tim Mullaney is Senior Staff Writer at McKnight's. Follow him @TimMullaneyLTC.

Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Marty Stempniak.