A Devastating Hour… and Simmering Controversy

January 31, 2017

By Matt Perry

If you want to spend a devastating hour in front of the TV, watch the excellent PBS documentary on Alzheimer’s disease Every Minute Counts, which aired last week and is still available online.

It’s all there. The devastating impact Alzheimer’s has on families and finances. The shocking discovery that neither private health insurance nor Medicare covers housing costs for long-term care. And the sordid reality that exhausted caregivers often get sick themselves.

Besides the heartbreaking rise in “granny dumping” – elders being left on hospital steps – the worst statistic of all is that today’s estimated five million Alzheimer’s cases is expected to grow to a whopping 14 million by 2050.

“The budget to take care of Alzheimer’s disease will be equal to the defense budget,” sighs one expert in the documentary, adding that it could bankrupt both Medicare and Medicaid (Medi-Cal in California).

About the only good news is that – for the first time – families aren’t suffering in the shadows but are speaking up, lobbying and demanding more attention, better care, and increased funding. (Beginning this year, physicians are finally being reimbursed by Medicare for cognitive screening and care planning.)

It’s all there.

Well, most of it.

While none of the human miseries illuminated in Every Minute Counts is debatable, the documentary tells only part of the story. What’s not revealed are the very real controversies surrounding Alzheimer’s – scientific and cultural – that could dramatically change the trajectory of the disease and its care.

Blinded By Science

Despite endless drug trials, there is no “cure” for Alzheimer’s disease. While Congress finally increased needed funding in 2015 following testimony by caregivers and celebrities such as Hollywood star Seth Rogen, the answer remains elusive.

And here’s where things get interesting – even weird.

The most dominant strain of Alzheimer’s research focuses on beta amyloid “plaque” buildup on the brain. Imagine, if you will, plaque buildup on your teeth. But there’s just one problem.   Patients with no plaque buildup have Alzheimer’s disease. And those with plenty of plaque don’t have it.

Yes, confusing.

The second major theory about Alzheimer’s disease is that there are “tau tangles” in the brain. Yet the number of studies on tau tangles pale in comparison with those targeting plaque.

Why? The leading proponent of the tau tangle theory once explained it this way: “Science is politics.”

In a world where money dominates research – in this case pharmaceutical companies drooling over a magic pill that could be worth billions of dollars – cheaper and simpler preventive solutions are largely ignored.

Pills over prevention. Sound familiar?

What’s receiving barely any attention – except for a few outliers – is the link between nutrition and Alzheimer’s. Some have even called it Type 3 diabetes, linking it to sugar consumption.

Meanwhile, a fascinating video pairs California researcher Dr. Dale Bredesen with Grain Brain author Dr. David Perlmutter, who came to similar nutrition-related conclusions from completely different angles. Their fascinating discussion is captured in the video from Novato-based The Buck Institute for Research on Aging, where Bredesen is the founding president and CEO.

With dark humor, Bredesen recounts the history of unpopular scientists who were attacked, disgraced, or went insane opposing mainstream assumptions. He then cites a leading researcher in the field of aging.

“Twenty years ago my wife said to me,” recounts Bredesen, “’whatever you guys find in the lab, it’s going to have something to do with basic things like nutrition and exercise and stress and sleep.’”

The possible culprit? Inflammation. Just as rheumatism is the result of inflamed joints or muscles, so an inflamed brain could be the smoking gun for Alzheimer’s disease.

Bredesen claims to have reversed the effects of Alzheimer’s disease using a holistic program with 36 carefully timed interventions.

A neurologist, Perlmutter says our expectation that a single magic bullet will “cure” the disease are woefully misguided – not just for Alzheimer’s, but all neurodegenerative diseases such as Parkinson’s disease, multiple sclerosis, and autism.

Yet these two pioneers in brain research are just one half of the controversy.

The Stigma: Culture Shift

A second controversy centers on the stigma attached to Alzheimer’s – and the way the disease is treated.

The late Dr. Richard Taylor – a leading proponent of humanizing dementia patients – fought tirelessly after his diagnosis during an uphill fight to see patients not as the “disease” but as simply human.

“I need you to enable me, not disable me,” echoes Karen Love, who heads the Dementia Action Alliance, one of a handful of organizations including the Dementia Spotlight Foundation fighting the stigma of Alzheimer’s and other forms of dementia. (Alzheimer’s is the most pernicious form of dementia.)

The California Culture Change Coalition wants to replace overwhelming cultural fear and denial with acceptance and empathy.

Dr. Allen Power left a medical career to focus on changing the stigma of the disease and has authored Dementia Beyond Disease and Dementia Beyond Drugs.

Others including Ashton Applewhite, author of This Chair Rocks: A Manifesto Against Ageism, say it’s time to change our attitudes about a “cure” and spend research dollars on supporting overwhelmed caregivers instead.

Nobody discounts the horrible effects – physically, emotionally and financially – of Alzheimer’s disease.

But if history has taught us anything, it’s that outdated preconceptions and closed minds can prevent revolutionary changes that help those desperately in need.

 

 

 

One Response to A Devastating Hour… and Simmering Controversy

  1. nancy schier anzelmo Reply

    February 1, 2017 at 8:32 pm

    Thank you Matt for your focus on the ” other side of the story” and a dose
    of HOPE too!
    Best,
    Nancy

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