The US Dept of Health and Human Services (DHHS) denoted an anniversary: “May 2022 marks the 10th Anniversary of the first National Plan to Address Alzheimer’s Disease. Alzheimer’s disease and related dementia affect an estimated 6 million Americans. The National Plan has accelerated federal activities…”
Dare I now write “blah blah blah”? Has anything really improved for patients or families? Anything substantial to celebrate that they directly helped?
Families, caregivers and people living with dementia are confronted daily with the realities of progressive disease, so they understand that governments can’t just improve conditions by the wave of a hand, a fiat or decree. At least they are not denying the problems that exist. But what about meaningful gains, something that hit a tangible goal?
If one looks at the National Plan’s “Milestones and Achievements Timeline” posted May 16, there is a listing of programs funded or initiated, but little that seems to have any widespread concrete impact on the lives of patients or caregivers. This is a DHHS website, which has responsibility for the FDA and CMS/Medicare, but it doesn’t even mention the qualified approval of Aduhelm in 2021! Was that an oversight, or does one read between the lines?
They don’t mention crossing the $1B and $2B lines in research funding within the last few years; of course that’s not an important metric for those affected, still waiting for ways to reliably improve the quality of life.
Looking at death rates: twenty years ago in 2002, AD was the eighth leading cause of death in the US. By ten years later, 2012, when the National Plan started, it was sixth. The last statistics easily available are from 2020, and AD has dropped to seventh…but only because COVID deaths became a new #3.
On the other hand, the good news is that a cross sectional survey study (Jan 2022) of Americans shows a decline in cognitive problems, in a ten year period. Using data from four years before the National Plan until ten years had passed, about 500K/year responding were > age 65, so the cumulative total was > 5 million . The article also cites studies from other countries showing a downward trend in cognitive problems. From their abstract:
“...Results:The prevalence of serious cognitive problems in the US population aged 65 and older declined from 12.2% to 10.0% between 2008 and 2017. Had the prevalence remained at the 2008 levels, there would have been an additional 1.13 million older Americans with serious cognitive problems in 2017. The decline in memory problems across the decade was higher for women (23%) than for men (13%). Adjusting for education substantially attenuated the decline…
…Conclusion:Between 2008 and 2017, the prevalence of serious cognitive impairment among older Americans declined significantly, although these declines were partially attributable to generational differences in educational attainment.” This is all based on the American Community Survey, run by the US Census.
So….independent of the National Plan, going to school not only makes you smarter, but long-term, keeps you smarter? Well, look at Manfred Steiner, already an MD PhD retired professor of medicine, who got his second PhD, in physics, at age 89 last year!
The National Plan was cited in an MMWR paper this month, about modifiable risk factors for “subjective cognitive decline (SCD),” a newer term about self-identified confusion and memory issues that might be on the Alzheimer spectrum. The CDC devotes a webpage to SCD, but now there might be Long COVID “brain fog.”
The method was a telephone survey, and the more risk factors (i.e., high blood pressure, not meeting the aerobic physical activity guideline, obesity, diabetes, depression, current cigarette smoking, hearing loss, and binge drinking), the higher the correlation with SCD.
So got to a school, but avoid too much of a party school, and wear a mask?
The Alzheimer’s Association, a large non-profit, has its own list of milestones over ten years, which does include Aduhelm’s approval. They have also posted main strategic goals for the next ten years. One is “care and support” for patients; and a companion research goal is for “life-changing” therapy.
They seem to avoid the medical term “disease-modifying” therapy, which has been controversial. They may have used the term “cure” more often in fund-raising materials.
Another non-profit, Us Against Alzheimer’s, lists their ten year accomplishments in an annual report from 2020. The AlzForum research website has a nice timeline, but not ten years specifically. It goes back further and lists both therapy trials and some failures, but that graphic hasn’t evidently been kept up since 2016.
Ten years basically coincides with AlzGadfly / CareGivingOldGuy’s personal family interest. The common, unfavorable comparison of AD to oncology has already been mentioned too many times here, but it’s more glaring if one looks at ten years. Much of oncology is incremental, but there is substantial cumulative progress.
Maybe a breakthrough in AD will be announced tomorrow. One hopes. But if things don’t go to plan, National or otherwise, will there be a point of futility in the next ten years so that funding might be thought better shifted to…I don’t know, cold fusion?
If education might help stave off dementia, one wonders if spending the last ten years at a party school might have been better for quality of life, if one can just watch out for those risk factors like too much smoking or binge drinking of course!
