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Is ‘dementia prevention’ just blaming the victim?

The Health Ministry should stop harping on diet and exercise and focus on better diagnostics and managing behavioral symptoms

I wasn’t surprised when I saw the new banner of the Ministry of Health’s website. After all, I had been eagerly told, six months previously, about the new plan to ‘Prevent Dementia’. I wasn’t surprised, but I was still concerned. I had the same question I had half a year ago when a top administrator in the MOH had told me about their plan. Seeing my skeptical face, she had responded, “Haven’t you read the Lancet article? One-third of all dementia cases can be prevented.”

“DEMENTIA: How can we reduce the risk?” Health Ministry website.

Having worked in the field of public health for more than two decades, naturally, I was thrilled to hear of an intervention that could drastically reduce a global burden of disease that currently costs the world ~818 billion USD per year. However, having worked in the field for over two decades, I was also doubtful of how they had arrived at those figures for a disease that has no firm diagnosis, consolidated treatment plan, nor existing medication known to effectively manage it.

So I went and read the Lancet article. It is an impressive meta-analysis. The researchers examined what percentage of the disease burden could be eliminated if certain risk factors were eliminated. Using data from several large population studies, they state that:

Type of risk factor to be eliminated Overall % Reduction in Future Theoretical Dementia Cases
Genetic mutation in the ApoE gene 7%

Early Life

Less formal schooling 8%

Mid Life

Hearing loss 9%
Hypertension 2
Obesity in mid-life 1

Late in life

Smoking 5%
Depression 4
Physical Inactivity 3
Low Social Contact 2
Diabetes 1

 

Overall this looks quite impressive. If you lump all the behavioral factors together, like smoking, and obesity, for example, 35% of all cases could be eliminated! Much more than just removing a genetic mutation risk.

Drastically reducing dementia risk seems doable.

Yet when I re-examine this chart, my skepticism returns. Every one of these modifiable risk factors appears on the to-do list of disease prevention in any self-respecting healthcare system. Countless global and local initiatives have been created to reduce obesity, increase a population’s physical activity, strengthen social support networks, and educate the population on nutrition.

Study after study, no matter how else their findings may conflict with one another, all agree, if you stop smoking, eat more fruits and vegetables, and exercise, you will reduce overall disease.

And yet, here we still are; high rates of cardiovascular disease, diabetes, cancer and growing numbers of those with chronic illness.

Why? Because it’s really hard to change people’s behavior, and there is so much synergy among risk factors, that we don’t really understand why we are living longer yet still have so much burden of disease.

What’s my point?

I am afraid that the MOH’s beautiful new plan of preventing dementia is simply blaming the victim, without putting true infrastructure in place to support that same victim.

I feel that this plan, based on the WHO’s 2019 guidelines for Risk Reduction of Cognitive Decline and Dementia, repeats what we already know we should be doing, yet, fails miserably to address the actual problems we have now.

I am afraid we are not only blaming the victim, but we are lumping together many groups of victims, and failing all of them simultaneously.

What do I mean? Three terms were bandied about in the Lancet article as if they were almost interchangeable: cognitive decline, dementia, and Alzheimer’s Disease. They are NOT interchangeable. In fact, the SDM 5, the bible of all diagnoses manuals, stopped using the term dementia and instead refers to it as a listing of “major neurocognitive disorders”. Which illustrates my point. Sure, apples, oranges and pears are all fruits, but ask any farmer, each one needs a completely different environment to grow in.

 

 

 

 

What am I saying?

Diagnosis – We have a problem.

How are people diagnosed with dementia? They’re not. Through a series of through the back door movements, older people are often brought to a physician by family members who are concerned, not that their loved one is not saying, ‘where’d I put my keys’, but more like, ‘Wait, is that my dog?’

As one “kind” neurologist told me, there’s no real way to diagnose Alzheimer’s Disease until you’re dead. With an autopsy. Thank you, Dr. Empathy.

But he was right. So how do you diagnose it? And what is it? Is it mild cognitive decline? Alzheimer’s? Dementia? Don’t worry, all roads lead to the same medication, the same lack of firm diagnosis, the same fragmented treatment and the same lack of education for caregivers.

That’s my actual point. Let the public health system continue plugging away with walking buddies, better food choices and out with trans fats. We know that helps us all feel better in the end. But don’t lump dementia into that category. Because it helps no one.

Yes, I am biased. In addition to being a healthcare advocate and public health professional for the past 25 years, I am now also my mother’s caregiver. And I am frustrated. Because dementia caused by traumatic brain injury is extremely different from dementia from Alzheimer’s, as it is from Lewy body dementia.

Forget the diet and exercise, Ministry!

  • Help us create accurate diagnostic assessments of mild cognitive decline when they are still actually mild!
  • Create educational platforms for family doctors to understand how to identify patterns in their patients’ behaviors so it doesn’t become a worried family member’s responsibility to bring the patient for diagnosis.
  • In one recent study, over 90% of caregivers mentioned behavioral symptoms as the most difficult issue they were dealing with when managing their loved one’s care. Yet there isn’t a single medication on the market which has been specifically tested to manage behavioral symptoms in patients with dementia. It is all anecdotal and trial and error. Focus on those issues!

Perhaps had my mother done more yoga and ate fewer cookies during mid-life, she wouldn’t have dementia in her later years. But being as that her father, grandmother, cousin and brother all had dementia, and she weighed 100 pounds on her wedding day, I’m going to go with, I don’t think so. Granted, genetically caused Alzheimer’s does not seem to account for a large percentage of dementia cases, but I return to my earlier statement, we really just don’t know the differences as of yet.

So why invest our budget on possible prevention techniques that exist in the vapor and instead, focus on creating solutions to deal with the disease as we are experiencing it now?

About the Author
Aviva Yoselis, MPH, is founder of Health Advize and director of medical advocacy services for the Shira Pransky Project. She is an expert in the field of health research, health behavior modification and shared medical decision making, with over 20 years of experience facilitating seminars and teaching classes on health behavior and health system navigation. She has a broad understanding of the biological sciences, bio-statistics, epidemiology, clinical trials and current issues in healthcare. Prior to moving to Israel, Aviva worked in the USA in health education and advocacy for low-income minority communities
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