May 12, 2020 / Blog / Immanuel Living

My Case for Getting Dementia Testing

I lose my glasses, forget actors’ names, repeat stories to my kids. None of these slips are red-flag symptoms of Alzheimer’s. Nevertheless, I’ve had a battery of cognitive assessments, from memory screens to genetic tests and brain scans.

Why? Because the science of brain health is advancing rapidly. Given my distressing family history of dementia, I prefer to err on the side of “knowledge is power,” rather than “ignorance is bliss.”

Earlier this year, to my surprise, the U.S. Preventive Services Task Force (USPSTF) chose not to recommend cognitive screening for asymptomatic older adults, saying the “evidence is insufficient to assess the balance of benefits and harms.” While evidence of harms of cognitive screening is limited, USPSTF says, some studies have shown “higher stress, greater depression and lower quality of life in persons aware of a diagnosis of cognitive impairment.”

Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, I had to know: Where do I stand?

I worry the net effect of this recommendation might be for people to think dementia testing is pointless — when its upside, underscored both by my own experience and experts’ insights — is huge.

Lifechanging, even.

“Cognitive screening” typically refers to brief tests like Mini-Cog, MMSE, MIS, and MoCA — the kind where you draw a clock face, recall words or count backwards by sevens to evaluate thinking skills. They’re part of Medicare’s annual wellness visit. The Self-Administered Gerocognitive Exam (SAGE) is a similar self-administered screen. Increasingly, people without symptoms also get other, prevention-focused tests — again, to assess status rather than to diagnose — including more detailed neurocognitive evaluations, physicals, labs and brain imaging (CT, MRI, PET).

I’ve had them all. Sadly, comprehensive testing isn’t financially or logistically feasible for everyone today. (My expensive scans, for example, were for a study I’m enrolled in.) Here’s why testing should be made more accessible and available:

To Get Clarity About Your Dementia Risks

Really: I’m no hypochondriac or test fanatic. But it’s one thing to hear of general risks and another to know your individual status. Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, much the way doctors now assess cardiac risk factors for heart disease and stroke, I had to know: Where do I stand?

My mental slips made me nervous as I underwent cognitive performance tests during a brain-health educational program I attended, again at the University of Texas-Dallas Center for Brain Health and at Weill Cornell Medicine’s Alzheimer’s Prevention Clinic, where I’m enrolled in two studies.

Thankfully, I aced them. Imaging showed no brain shrinkage or amyloid plaques, both dementia precursors. Yet, other testing revealed a number of modifiable risk factors setting me up for worsening future scores, including high homocysteine (an amino acid linked to dementia that’s remedied with B vitamins), a thyroid condition, sub-optimal cholesterol and a sad fat-to-muscle ratio.

To Motivate Behavior Improvements

There’s nothing like proof of weakness to motivate behavior change. For the first time in my life, I joined a gym and hired a trainer and began brain-beneficial high-intensity interval training. (Just walking — my old exercise — wasn’t enough, I learned.) I became even more vigilant about my Mediterranean diet, took prescribed supplements, learned “brain breaks” like mindfulness and more.

Two years on, my improved cognitive scores and lower cholesterol keep me going. As does finding myself in stronger shape at 60 than I was at 40. (True, I gained several pounds…but of muscle.)

I now run every choice I make through the lens of my brain health: Is this helping or harming?

For someone else, testing might raise urgency about lousy sleep, hypertension, poor glucose control or stress. Swiss researchers have suggested that having “motivational reserve” — motivation to improve one’s cognitive health — may even have a protective effect on the course of mild cognitive impairment.

To Establish a Cognitive Baseline

Would knowing my cognitive status also be a useful comparison to future changes? I asked this of some geriatricians. Absolutely, Dr. Howard Fillit, who’s also a neuroscientist and founding executive director of the Alzheimer’s Drug Discovery Foundation, told me.

“Data shows that fifty percent of people with Alzheimer’s aren’t diagnosed until the moderate stage,” he said. “People say, ‘There’s nothing you can do.’ That’s where I really go nuts.”

The sooner cognitive symptoms are noted, the sooner that any reversible explanations (like polypharmacy, low B12 or depression) can be considered. The sooner helpful medical care can begin, too; if not medication (the current crop is unimpressive), then joining clinical trials, putting memory supports in place or managing other conditions differently. For example, Fillit’s own father, a meticulous diabetic, repeatedly landed in the hospital before anyone realized he was misdosing insulin due to mild cognitive dysfunction.

To Help My Family

Some say they’ll worry about their cognitive status down the line. Not a great plan, said Dr. Leslie Kernisan, geriatrician and founder of Better Health While Aging, an educational site on health and caregiving. “There’s a gray area when people around you are worried before you are. You’re putting yourself and others at risk, but refusing to go to the doctor, mismanaging money, continuing to drive and ferociously resisting help.”

An average of two years of this turmoil ensue between family noticing symptoms and diagnosis, according to Fillit. By then, it’s usually too late to competently take part in detailed, dementia-specific advance planning.

“If you want to spare your family the norm, get evaluated,” Kernisan said.

To Ease Anxiety

Finally, many avoid cognitive testing due to a fear of finding out. I don’t get it. Research isn’t finding increased anxiety or depression from cognitive testing, as the USPSTF noted. Many people find relief in getting clarity, one way or the other. Anyway, most of us are the worried well: 97% of those 65-74 and 83% of those 75-84 don’t have Alzheimer’s.

Worth remembering: None of these tests can definitively say if you have, or will get, Alzheimer’s. Not even testing for the APOE-4 gene variant that carries a higher Alzheimer’s risk. Yes, I welcomed this controversial test, too. Though curious, I knew it doesn’t predict anything; it’s just another bit of useful data to inform choices and plans.

Like so many, I’ve experienced dementia’s dreadfulness up close, as it haunted five beloved relatives and upended our lives. Keeping a sharp proactive eye on this specter feels far less stressful than letting it sneak up on me unawares.

(Next Avenue invites opinion pieces that reflect a range of perspectives. Doing so helps our readers learn about views from a multitude of experts.)

By Paula Spencer Scott
Paula Spencer Scott is the author of Surviving Alzheimer’s: Practical Tips and Soul-Saving Wisdom for Caregivers and Like Mother, Like Daughter. A longtime journalist, she’s also an Alzheimer’s and caregiving educator.@PSpencerScott