Good stuff in the 2022 Alzheimer's Association Facts and Figures Report

Readers of this blog know that in March of each year I eagerly anticipate publication of the Alzheimer's Association Facts and Figures Report.  The 2022 edition is now out, and I have just finished reading it.  (See it here.)  I thought this year's edition was especially useful, and I'd like to share with you my takeaways.

Each year has a special theme.  Past themes have featured topics like the burden of dementia on caregivers and the cost of care for Alzheimer's patients.  This year it's about mild cognitive impairment (MCI).  If you read Beating the Dementia Monster, you know that MCI is my diagnosis with the statement that my MCI is most likely due to Alzheimer's disease.  We recall that Alzheimer's disease is finally diagnosed in the autopsy, but medical science has been sharpening its tools for diagnosing those of us who are still living.  So this issue was particularly interesting to me.

You will recall that MCI is one stage of the disease on the way to dementia.  MCI ends and dementia begins when the patient is no longer able to conduct all daily tasks without assistance.  In Beating the Dementia Monster, we describe the stages of Alzheimer's disease as 1) preclinical (or prodromal), 2) "MCI due to Alzheimer's disease," and 3) "Alzheimer's dementia."

I found interesting facts throughout the report, not just about MCI.  So here are some of them:

1.  The accuracy of the statistics we have on the prevalence of Alzheimer's disease, Alzheimer''s dementia, and MCI due to Alzheimer's disease has been improving.  The challenge of counting those in the various stages of Alzheimer's disease are confounded by the reluctance or inability of many doctors to diagnose Alzheimer's disease and the other causes of dementia and death that so often appear alongside Alzheimer's disease.  New studies are trying to improve how the statistics are gathered.  But here are the latest numbers of interest to me.

-- We believe that 6.5 million Americans are now living with Alzheimer's disease.
-- Ten percent of people 65 years of age or older have Alzheimer's dementia.
-- Broken down by ages, the following have Alzheimer’s dementia: 5% of people age 65 to 74, 13.1% of people age 75 to 84, and 33.2% of people age 85 and older. 

-- At the moment, our best estimate is that eight percent of Americans 65 and older have MCI due to Alzheimer's.  But that appears to be much lower than the likely true number.

 

BUT -- 15% to 30% of those diagnosed with Alzheimer's disease while alive are found not to have the brain changes associated with the disease on autopsy.  So there are a lot of false positives, and these are only recognized when there is an autopsy.  This, of course, is another factor skewing the statistics. 

 

2.  Only 0.1% of the population is believed to have younger-onset Alzheimer's dementia.  Younger onset dementia strikes when someone is in their 50s or even younger.

 

3.  MCI due to Alzheimer's disease is hard to diagnose.  It requires biomarker evidence like MRIs and PET scans.  When diagnosed at the level of the primary care provider (PCP) these may not be ordered, and the accuracy of our statistics needs to be improved. 

4.  Clinicians often don't tell their patients about a diagnosis of Alzheimer's dementia.  (I don't know if they still tell their families.)

5.  The higher prevalence of Alzheimer's disease in women may be explained by the fact that, in the World War II generation, far fewer women went on to higher education.  As we explained in Beating the Dementia Monster, learning, especially when you are younger, has a protective effect with respect to Alzheimer's disease.  Less higher education would mean higher incidence of the disease later in life.

6.  In the same way, the doors to higher education for African Americans and some other minorities who are now 65 and older were not as wide open as they were to people of European ancestry.  Not surprisingly, we find a higher incidence of Alzheimer's disease among them.  This should inform our approach to studying Alzheimer's disease in these populations.

7.  The best quality statistics available are actually for Americans of Japanese ancestry, and they show the lowest incidence of Alzheimer's disease of any ethnic group.  (My wife is of Okinawan ancestry, and Okinawans live the longest of any population on the planet.  I'm not sure about the influence of an American diet on those who were born here and grew up here ... with American fast food, exercise habits, etc.)

8.  Black and Hispanic populations have higher incidences of diabetes and cardiovascular disease, and those are associated with higher risk for Alzheimer's disease.  When studies control these factors, incidence of Alzheimer's disease in these populations appears to be consistent with those of European ancestry.

9.  Alzheimer's disease was the sixth leading cause of death in the United States in 2019, but the seventh in 2020 and 2021.  Why did it go down?  Because covid debuted at number 3 in the list in 2020 and moved Alzheimer's disease down a notch.

 

10.  Covid 19 very much confused the process of keeping statistics on deaths from Alzheimer's disease.  It was difficult to make a distinction between people dying from Alzheimer's or dying with Alzheimer's.  If someone dies who had covid 19 and Alzheimer's disease, what should the death certificate say about cause of death?  How should that death be applied in the statistics tracking both diseases?  And what of people with Alzheimer's disease aggravated by the lockdowns and subsequent social isolation?  (We wrote about this back in May 2020 regarding the death of a friend of mine.)

 

11.  The report featured a striking chart depicting the changes in the numbers of deaths due to various causes between 2000 and 2019.  While deaths (as a percentage of all deaths) due to heart disease, stroke, and HIV were down, deaths due to Alzheimer's disease were up a whopping 145%.  Of course, when deaths due to some causes go down, deaths due to other causes will go up.  When people live longer, they are more likely to die of Alzheimer's disease.  And the treatments for other diseases are far more advanced than treatments for Alzheimer's disease.  

12.  Two thirds of people who die of dementia live in nursing homes.  That compares to 20% of people who die in nursing homes of cancer and 28% of people who die of all conditions.

13.  They again devoted considerable space to the burden of care-giving.

 

14.  Caregivers with spouses who died with dementia were much more likely to die within a year of the death of the patient than when the patient died of other causes.  This reminded me of the deaths of two women that we knew well who died less than a year after their husbands died with dementia.

 

 15.  Fifty-five per cent of PCPs report there are not enough dementia care specialists in their communities.  Also, more training is needed for PCPs and non-physician dementia care workers.

16.  The report focused on why we should be paying attention to people with MCI even though they are still able to care for themselves.  

17.  Twelve to 18 per cent of Americans over 60 are living with MCI.  Ten to 15 per cent of these will transition from MCI to dementia each year.  (Quick fake math:  If I developed MCI in 2014, each subsequent year I should have had about a 12% chance of the MCI evolving into dementia.  Consistent with what a neuropsychologist told me in 2017, I should be dead by the time I'm 75 -- three years from now.  I tell about the discussion with the neurologist in Beating the Dementia Monster.)

 

18.  One third of people diagnosed with MCI develop Alzheimer's dementia within five years.  (This statistic is not new.  We examined it in Beating the Dementia Monster.)  But some do not.  It's not clear to me -- and is likely unknown -- how many with MCI due to Alzheimer's do not develop dementia.  Usually when someone has MCI we just don't know if it's due to Alzheimer's disease.  My bet is that in cases of MCI due to Alzheimer's (as opposed to other causes of MCI) all develop Alzheimer's dementia at some point.

19.  It is a challenge to distinguish between individuals with memory loss due to normal aging, due to all causes of MCI, and MCI due to Alzheimer's disease.  This confuses our statistics.

20.  There is a distinction between amnestic MCI and nonamnestic MCI.  In amnestic MCI memory issues predominate, while in nonamnestic MCI other issues like visuospatial perceptions, language, and executive function predominate.  In Beating the Dementia Monster, we discussed "the four syndromes."  One of the syndromes was amnestic MCI, but we further broke nonamnestic MCI down into three more syndromes.  My first symptoms appear to have been nonamnestic, for example problems seeing pedestrians in the crosswalk.  (So I stopped driving.)

21.  This article from the journal Neurology was frequently cited throughout the portion of the report dedicated to MCI.  You don't need to read it.  There's nothing in it that you didn't learn when you read Beating the Dementia Monster -- except that, in medicine, there is growing reliance on the lifestyle changes we characterized in "the dementia toolkit" as the primary approach to confronting MCI.

22.  Nearly half of people diagnosed with MCI were found to be cognitively normal after 2.4 years.  I'd bet that most of these MCI cases were caused by medications that were later changed.  It's fairly common for a medication to cause MCI, and the MCI clears up when the medication is changed.

23.  There was discussion about increased use of PET scans to diagnose Alzheimer's disease more confidently.  As we discussed in Beating the Dementia Monster, PET scans are expensive, and you need good justification to get the insurance company to pay for one.  This has changed now that Aduhelm is approved for treatment of Alzheimer's disease.  You don't want to spend all that money for Aduhelm and risk brain hemorrhages when your MCI was really caused by your meds.  So insurance companies are now more willing to pay for a PET scan.  I would definitely like a PET scan to confirm the conclusions my neurologists made from my many MRIs.

24.  Because Alzheimer's disease is most effectively addressed in earlier stages, there is a push to not only use PET scans in diagnosis, but also to move forward with approval of blood tests to diagnose Alzheimer's disease.

 

25.  There are currently 104 treatments for Alzheimer's in clinical trials or in some other stage of the regulatory approval process.

26.  About 80% of Americans diagnosed with MCI do not want to see a doctor after experiencing symptoms of MCI.  I think this is tragic, and it largely comes from the well-circulated idea that there's nothing that can be done for Alzheimer's disease.  I've met too many people that just give up when they think they may have a serious memory issue.  As we explain in Beating the Dementia Monster, there's a lot that can be done to fight the advance of cognitive decline.

27.  But then a third of PCPs are not comfortable diagnosing MCI due to Alzheimer's disease.  They cite difficulty in differentiating MCI from normal aging (72%) and difficulty in interpreting patient reports of daily functioning (51%).

28.  Fewer than one in five Americans have heard of MCI.  This doesn't surprise me.  The first time I heard of MCI was when I went to a neurologist over my memory and cognition issues.  (I've learned a lot since then.)

29.  85% of Americans say they want to know if they have MCI, but only 40% say they would talk to their doctors right away if they experienced symptoms.

30.  Only 40% of PCPs say they are familiar with biomarker tests for Alzheimer's disease.  As a consequence, when MCI is detected, only 18% of patients are referred for further testing.  

This is my condensation, but there was a lot more.  If you're interested in this sort of thing, it would be well to download a copy and read it yourself.