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Stop the Hysteria About Dementia

Kirsten Jacobs August 27, 2018
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The firehose of news we receive each day about the predictors of dementia sends some pretty dangerous messages to the average consumer.

I don’t know about you, but I’m developing a love-hate relationship with my newsfeed. On the one hand, it’s wonderful to have access to the latest news as it happens, especially when that news relates to the field of aging services. But sometimes that news can be overwhelming, especially when it comes to dementia.

As the director of dementia and wellness education at LeadingAge, I’m always on the lookout for new studies that could help our members provide high-quality services and supports for people living with dementia. But I’m beginning to dread that moment each morning when I turn on my computer, only to learn about one more personal or health characteristic that “predicts” my chances for developing dementia sometime in my lifetime.

During the last month alone, I’ve read about research suggesting that my chance of developing Alzheimer’s disease or another form of dementia will increase if I:

Had low school grades at the age of 10; experienced stress early in life; happen to lose multiple teeth or have difficulty chewing hard food when I get older; experience changes in how I walk, like taking shorter strides or using fewer arm swings; have high blood pressure, am obese, or smoke; have levels of magnesium in my blood that are either too high or too low; lose the ability to smell peppermint, fish, orange, rose, or leather; am depressed or have pre-diabetes; score high on a frailty index comprised of 47 health deficits; live in an area with high levels of pollution; experience a blow to the head; am socially isolated; am experiencing gradual hearing loss; don’t dream very often; have chronic kidney disease; give birth to 5 or more children; have the combination of low muscle mass and high fat mass called “skinny fat;” feel light-headed when I stand up; or am pessimistic about growing old.

By the time I finished cataloging all these dementia predictors, I have to admit I was experiencing a few of the symptoms described in the literature. My stress level and my blood pressure were elevated. I was also feeling a bit pessimistic about growing old.

Sending Harmful Messages

My job has taught me the skills I need to discern which research studies are serious enough to deserve my attention, and which studies get attention not because they represent good science, but because they lend themselves to dramatic headlines that will produce Internet clicks.

That’s got me thinking. If I reacted to my list of predictors in such a visceral way, how would the average consumer respond?

The fire hose of news we receive about dementia—especially the predictors of this disease—sends some pretty dangerous messages to that average consumer. Those messages tell us that:

  1. Dementia is inevitable: Practically every American is likely to find at least one of their own characteristics among the 19 bullets listed above. Does that mean each one of us will receive a dementia diagnosis? Hardly. Recent data tell us that the proportion of Americans living with dementia is actually declining, even though demographic shifts are causing the number of people with dementia to increase.
  2. You should be afraid: Hearing a new predictor of dementia each morning can wear you down and make you fearful about the future. Sometimes I see a dementia diagnosis lurking around every corner, even though I know better than that.

I’m not suggesting that we stop doing research about dementia predictors. Nor do I think that every study about dementia predictors should be taken with a grain of salt. What I am suggesting is that we need to begin talking differently about dementia.

We need to stop the hysteria that seems to be mounting around this disability. We need to stop using fear of dementia to elicit a response from consumers—whether that response is a donation to a worthy cause or a click on social media.

Nothing To Fear But Fear Itself

As Franklin Roosevelt reminded us so powerfully in 1933, fear doesn’t help anyone.

Fear prompts some people to hide the early symptoms of their dementia, and forego medical consultations that could delay dementia’s progression, or help the person with dementia live with the disease.

Fear may prompt some families and friends to pull away from a person living with dementia, just when that person most needs support. While many families rally around their loved ones living with dementia, we’re learning that other families distance themselves from relatives because the disease makes them afraid and uncomfortable.

Fear may also prompt residents of an assisted living or life plan community to pull away from other residents living with dementia, or to request that people living with dementia not be allowed in the dining room or other common areas.

Fear breeds misunderstanding. It’s common for articles about dementia to be accompanied by sorrowful images of people in the later stages of the disease. As a result, it’s easy to jump to the false conclusion that those images represent everyone living with dementia. These pictures keep us from understanding that there are many different types and stages of dementia and, as advocates like to remind us, “When you’ve met one person with dementia, you’ve met one person with dementia.”

These fear-producing images also keep us from understanding that people at various stages in their dementia journey can think, and speak, and love, and laugh, and learn new things, and enjoy life. Each person living with dementia was a person before his or her diagnosis, and remains a person after the diagnosis.

Let’s not let fear convince us otherwise.

 

This piece was originally published on LeadingAge.org.
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Kirsten Jacobs

Kirsten Jacobs, MSW, is the Director of Dementia and Wellness Education at LeadingAge. With over seventeen years of experience in senior living, aging services and long-term care, Kristen leads the organization’s dementia and wellness education strategy.

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