I didn’t know much about Alzheimer’s back in 2007, but that
was the year when I started searching the Internet for reasons to explain why,
in my opinion, my wife was exhibiting worrisome behaviors. Nobody else seemed to be noticing those
behaviors, but I was seeing them more and more.
I continued worrying, I continued educating myself, and by early 2008 I
was convinced that my wife was already dealing either with Mild Cognitive
Impairment (MCI) or the early stages of Alzheimer’s disease (AD).
Although my wife saw no reason to do so, I was able to
convince her to see a neurologist after we returned from a particular trip in
2007. During that trip, my wife exhibited
many worrisome behaviors. She was
forgetting simple things (like our hotel room number or the names of our children
and grandchildren), losing and misplacing things (leaving her sweater, coat,
camera, and pocketbook in hotel rooms and restaurants) and was frequently
disoriented when visiting sites in cities.
My wife and I had recently entered our 60s and, like many
friends our age, we were already starting to have those occasional “senior
moments” when we’d forget something we knew well. But my wife getting us lost on a regular
basis was a major worrisome behavior. I
always got lost because I have no sense of direction, but I had always relied
upon my wife’s “built-in GPS system” that, until that trip, had always guided us
correctly wherever we were. On that 2007
trip, however, even I knew she was repeatedly leading us in the wrong direction,
we were frequently lost, and I, the one with no sense of direction, had to
somehow lead us back to the correct location.
Throughout the rest of that year and in 2008, my wife’s
doctors … first just our internist, and then the neurologist … saw no signs of
MCI or AD. They were both treating her
first for stress, then for anxiety, and then for depression. Throughout that time, I could not get my wife
to agree to see another doctor for a second opinion, and each time I’d bring up
that suggestion she would scream at me saying it was unnecessary. Towards the end of 2008 and into early 2009,
the neurologist suggested that my wife also be seen weekly by a clinical
psychologist to help her with “coping mechanisms.”
At home I was regularly seeing new worrisome behaviors emerge,
but none of my wife’s doctors observed these behaviors and all of her cognitive
testing (MMSE tests, mostly) and brain scans seemed to be normal. Despite what the doctors told me, I was now totally
convinced that my wife was in the early stages of AD based upon all of my
online reading from highly reputable governmental sites (such as NIA, NIH, and
CDC), hospital sites (such as Mayo Clinic, Johns Hopkins, and Cleveland Clinic)
and organizational sites (such as the Alzheimer’s Association, Fisher’s Center
for Alzheimer’s Research Foundation, and UsAgainstAlzheimer’s).
In early 2009, feeling very frustrated that my wife was not
properly diagnosed and was not being treated properly, I confronted the
clinical psychologist. I asked that if
it were his wife being treated for more than a year for stress, anxiety,
depression… and was actually getting worse … would he take his wife for a 2nd
opinion? The psychologist said he had
just spoken that morning with my wife’s neurologist. I cut him off in mid-sentence, saying I had no
faith in that neurologist. I again repeated,
would he take his wife for a 2nd opinion? The psychologist, now red-faced, said yes. I turned to my wife and asked, “Now can I take
you for a 2nd opinion?” She said
“yes.”
Within a month my wife was seen by a geriatric psychiatrist affiliated
with an Alzheimer’s Disease Research Center.
After just two lengthy visits and many hours of bloodwork, interviews, cognitive
testing (not just the MMSE, but many tests), and new brain scans … and lengthy
interviews of me to determine behaviors I was witnessing … my wife was diagnosed with early onset AD. Within a month my wife was taking Aricept, enrolled
in a promising clinical trial, and my frustrations eased considerably because I
now felt (in retrospect, naively so) that my wife was finally being treated effectively.
It has now been 15 years since my wife’s diagnosis in 2009. What have we learned about the cause or
causes of AD in those 15 years? Sadly, the
short answer is … not all that much.
Fifteen years ago I learned about amyloid-beta proteins
(plaques) and tau proteins (tangles) and noted that most AD research money
flowed into projects intended to definitively determine how one of both of
those proteins were the cause(s) of AD. Unfortunately,
here we are in 2024 and we still haven’t conclusively determined if that is
true, and at this stage many researchers are wondering if the presence of amyloid
proteins may the results of AD rather than the cause.
Based upon a 2022
study at the University of Cincinnati, the chief neurologist and his research colleagues
“hypothesized that plaques are simply a consequence of the levels of soluble
amyloid-beta in the brain decreasing. The paradox is that so many of us accrue
plaques in our brains as we age, and yet so few of us with plaques go on to
develop dementia.” 1
The latest statement from CDC, the
Centers for Disease Control and Prevention, states the following: “Scientists
do not yet fully understand what causes Alzheimer’s disease. There likely is
not a single cause but rather several factors that can affect each person
differently.” 2
CDC does note some risk factors for AD and several of those are listed on the CDC
site. Unfortunately, people have no
control over the number one risk factor … age.
As we have long known, “Age is the best known risk factor for
Alzheimer’s disease.” All
other risk factors noted by CDC are either ones we cannot control (e.g., family
history) or statements with caveats such as, “a healthy life style may (my
emphasis added) play a role in developing AD.” 2
The NIA, National Institute of Aging, notes the following on its
site: “In recent years, scientists have made tremendous progress in better
understanding Alzheimer’s and the momentum continues to grow. Still, scientists
don’t yet fully understand what causes Alzheimer’s disease in
most people.” 3 The
NIA site suggests something similar to what is on the CDC site. In its section, “What causes AD,” The NIA
page has the following statement: “The causes probably (my emphasis
added) include a combination of age-related changes in the brain, along with
genetic, environmental, and lifestyle factors. 3
Similar
non-emphatic statements can be found on just about any reputable site. According to the Mayo Clinic, “The exact causes of Alzheimer's disease aren't fully understood … Scientists
believe (my emphasis added) that for most people, Alzheimer's disease is
caused by a combination of genetic, lifestyle and environmental factors that
affect the brain over time.” 4
Organization websites, such at that of the Alzheimer’s Association, say
something similar: “Researchers
believe there isn't a single cause of Alzheimer's disease. It likely (my
emphasis added) develops from multiple factors, such as genetics, lifestyle and
environment. Scientists have identified factors that increase the risk of
Alzheimer’s. While some risk factors — age, family history and heredity — can't
be changed, emerging evidence suggests there may (my emphasis added) be
other factors we can influence.” 5
So,
whereas we have made some progress in learning about AD in these past 15 years,
we still haven’t learned what causes AD. It is extremely difficult to effectively
prevent or treat a disease when we do not know the cause(s). We are basically proceeding with common-sense
advice that seems rational … that a healthy life style of eating nutritious
foods, regularly exercising, avoiding brain injuries, etc. may (my
emphasis added) prevent some (my emphasis added) people from
developing AD. But, as of today, we do
not know that for sure.
It is too late for my wife, who died in 2016, and millions of
others who have passed away directly because of AD or with AD as a major
contributing factor. Although continually
listed among the top 10 causes of death in this country, the number of people
dying with or because of AD is considered significantly greater than what is
reported on death certificates. According
to the Alzheimer’s Association, “Death certificates for individuals with
Alzheimer’s often list acute conditions such as pneumonia as the primary cause
of death rather than Alzheimer’s … even though Alzheimer’s disease may well
have caused the acute condition listed on the death certificate.” 6
When I received the death certificate
from the nursing home after my wife’s death, I was shocked to note that AD was
not mentioned as either the direct cause or as a contributing cause. 7 When I asked the nursing home doctor why, his
response was that he couldn’t prove that AD was the cause. When I asked why he didn’t even include AD as
a contributing cause, he said he couldn’t prove that either.
Therefore, 2016 CDC mortality statistics
for deaths due to AD in the U.S. did not include my wife’s death. On page 6 of its 2016 report on mortality
rates, CDC listed AD as the 6th leading cause of death in this
country in 2016. 8 On page 62 of that same CDC report, the following
statement appears: “Quality of mortality data is largely dependent on proper
and thorough completion of death certificates
by certifiers. Accuracy and completeness
of information entered on death certificates can vary by state from year to year.” 8 One can
only wonder how many thousands of deaths in this country due in whole or part
to AD each year have not been reported accurately on death certificates.
I hope our government continues to increase funding for AD
research in hopes of finding an effective means of prevention or cure. In 2009, the NIH allocated $457 million for AD research. 9 I am
very pleased to note that estimated NIH funding for AD research proposed for
2024 is approximately $3.5 billion. 10 Hopefully,
increased federal spending will result in promising research and discovery.
Discovering a definitive way to prevent AD is the goal, but I’d be
very happy if we can just learn how to more effectively treat this
disease. Recent medications approved by
the FDA to help those with AD do not excite me. In fact, if my wife were still alive, I doubt
whether she or I would have wanted her to take any of these new medications. 11
But even if AD remains a death sentence with no cure, treatment
that can enable people with AD to maintain and enjoy a high quality for life
for 10, 15, or 20 years after diagnosis would be a wonderful advance.
Maybe 2024 will be the year when this happens.
2. Alzheimer’s
Disease and Healthy Aging. Centers for
Disease Control and Prevention. Accessed
on January 14, 2024. https://www.cdc.gov/aging/alzheimers-diseasedementia/aboutalzheimers.html#:~:text=Scientists%20do%20not%20yet%20fully,risk%20factor%20for%20Alzheimer's%20disease.
4. Alzheimer’s
disease. Mayo Clinic. Accessed on January 14, 2024. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447
5. Causes and Risks
for Alzheimer’s disease. Alzheimer’s
Association. Accessed on January 14, 2024.
https://www.alz.org/alzheimers-dementia/what-is-alzheimers/causes-and-risk-factors
6. 2023 Alzheimer’s Disease Facts
and Figures. Alzheimer’s Association. Accessed on January 14, 2024, p. 35. https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf
7. Vann, Allan S. Reporting Deaths of Patients with Alzheimer’s. Journal
of the American Geriatrics Society. December,
2016. 64:12, pp. 2419-2420.
8. Deaths: final data for 2016,
July 26, 2018. Centers for Disease
Control and Prevention. Accessed on
January 14, 2024. https://stacks.cdc.gov/view/cdc/57989
9. Research
Priority Setting, and Funding Allocations across Selected Diseases and Conditions. National Institutes of Health. Accessed on January 14, 2024. https://www.gao.gov/assets/gao-14-246.pdf
10. Estimates of Funding for Various
Research, Condition, and Disease Categories (RCDC). NIH RePORT.
Accessed on January 14, 2024. https://report.nih.gov/funding/categorical-spending#/
11. Vann, AS. ”Reflections of
An Alzheimer’s Spouse.” Personal Blog columns
# 28, 31, and 32 discuss recent medications approved by the FDA within the past 2 years. https://allansvann.blogspot.com/
