From the first moment I discovered my dad
had been diagnosed with Alzheimer’s, it seemed like I was alone in this ugly
place. Even ones who had loved ones suffering in this way; even though people TALKED
about the disease, it felt for me like they did little more than mumble about the
experience. Not one to shut up for any known reason, I added a section to this
blog…
Every month, I’ll be highlighting Alzheimer’s
research that is going on RIGHT NOW! Harvested from different websites, journals
and podcasts, I’ll translate them into understandable English and share them
with you. Today: “A worldwide quest is under way to find new treatments to
stop, slow or even prevent Alzheimer's disease.”
Pretty much since Dad was diagnosed, I’ve planned on joining some kind
of research group. I don’t want to have Alzheimer’s “sneak up on me”.
Talking to my doctor was like talking to a wall. He suggested I do an
Alzheimer’s memory test now so we can get a baseline, and while I understand
that that would be a good thing, how exactly does that help me? He suggested I
contact my health insurance’s Neuroscience center and see how they might help
me. I did that as well.
In poking around on the website below, I discovered that I could get on
a national register for volunteering:
“If you are interested in participating in a current clinical trial,
use Alzheimer's
Association TrialMatch®, a free, easy-to-use clinical studies matching
service that generates customized lists of studies based on user-provided
information. A lack of volunteers for Alzheimer's clinical trials is one of the
greatest obstacles slowing the progress of potential new treatments.”
What I found startling was this: “A lack of volunteers for Alzheimer's
clinical trials is one of the greatest obstacles slowing the progress of
potential new treatments.”
Why would anyone who’s watched a parent or partner suffer the agonizingly
slow progressive debilitation of this disease on someone they love wouldn’t run
screaming to a clinic to volunteer to help stop it? Why aren’t research
programs overrun with clamoring volunteers? Are people blind?
So then, I did my research. Being a science teacher as well as a school
counselor, I “live in” numbers – populations, atmospheric components, velocity,
demographics…I’m familiar with them and comfortable with them. It’s part of
what makes me roll my eyes at the current pandemic – the numbers are nowhere near
as alarming as broadcasters and I’m keenly aware of how the numbers are being manipulated,
massaged, and preferentially highlighted. Don’t get me wrong, the pandemic is
serious and I use my mask, practice social distancing, and wash my hands more
(more in the past two months than in my entire life, I’m pretty sure!).
However, this is one statistic I never looked up:
“Studies of family history say that if you have a close relative who
has been diagnosed with Alzheimer's disease—the most common form of dementia in
older adults—your risk increases by about 30%. This is a relative risk
increase, meaning a 30% hike in your existing risk.
“If you are age 65, the risk of being diagnosed with Alzheimer's is
2% per year, although this also means a 98% chance per year of not developing
Alzheimer's. In absolute numbers, a 2% annual risk means that two out of 100
65-year-olds will develop dementia every year.
“Family history raises the 2%
annual risk by about 30%, to 2.6% per year.
That means going from 20 cases in a group of 1,000 to 26 in 1,000, or six
additional cases in 1,000. ‘So the absolute increase is relatively small,’ Dr.
Marshall says.
Age raises the chance of Alzheimer's more than family history. People
in their 70s have a 5% chance of being diagnosed—more than twice that of people
in their 60s. Family history raises this by 30%, from 5% to 6.5%. Again, the
absolute change is relatively small.”
Now this is where statistics thrown around and where the idea of preferential
highlighting comes in. If this were a news broadcast, they’d say, “Breaking
news: family history raises your annual risk of being diagnosed with Alzheimer’s
by 30 percent!”
They would ignore the actual percentage of people being diagnosed with
Alzheimer’s – which is TWO percent (and not a very scary number at all – this from
someone who is sitting in this two percent right now.) to a (staggering)
2.6%... (the .6% is 30% of 2%...)
They would also fail to note that you would then have a 97.4% chance of
NOT being diagnosed with Alzheimer’s Disease. That doesn’t make very good “breaking
news” at all. In fact, the chances of me NOT getting Alzheimer’s are overwhelmingly
in my favor.
So, why should I join the research?
Because for me, it’s the right thing to do.
I’ll keep you posted.
Resources: https://www.alz.org/alzheimers-dementia/research_progress/treatment-horizon,
https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/about-clinical-trials
Image: https://www.meduniwien.ac.at/web/fileadmin/_processed_/e/1/csm_shutterstock_142671010_4683b6bf13.jpg
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