Too soon for Alzheimer's Prevention?

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Indywoman
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Re: Too soon for Alzheimer's Prevention?

Postby Indywoman » Sat Jan 05, 2019 1:57 pm

I have been thinking about this topic ever since Julie first posted it and think a public campaign for risk modification is a great idea. Here are some thoughts in no particular order.

1. Who is the target audience? For example, if we want to reach younger people in teens and 20's, this will be different than those who are raising families in their 30's and 40's. Since I spent 38 years teaching those in the 16-18 age range and my own kids are 26 and 31, here are some bullet points on that age group.

There needs to be a sense of urgency and immediacy as in "Here’s what you can do NOW as in right now." We have seen this change with those in their teens and 20's in anti-bullying campaigns and in reduction in smoking until recently with the advent of vaping.

There needs to be development of an app specific to reduction in Alzheimer's risk that tracks e.g. sleep, exercise, and diet. It should not do too many things, but focus on a few big ones. While there are apps and devices that already do this, they are left as good practice, and not targeted specifically to Alzheimer’s. Those apps need to be specific on how much exercise per day or week, how much sleep at night, -all according to the latest research and kept updated.

AD needs to be targeted in health classes, just like sexuality or mental health. The majority of people across demographics do not know that Alzheimer’s starts years earlier. Those of us on this site can call a school near us to give a presentation, perhaps opening with student reactions to Warren Buffet’s statement about owning only one car in a lifetime and how that would change a person’s care of that car. Many of the students I taught had a grandparent with Alzheimer’s and felt very down because they loved that grandparent or sad for their parent who was having to take on this economic and emotional burden. While ageism is also strong, there has been so much growth in acceptance of “difference” in this demographic that is in our favor.

2. Social media has to become a better tool for Alzheimer’s advocacy. The CDC has now learned this after several mishaps, and did much better with educating on the Zika virus. See this link https://www.wnycstudios.org/story/when- ... l-we-trust

3. There needs to be a compelling visual, i.e. one that gets updated and targeted to different age groups. This visual must dispel the perception that Alzheimer’s is a natural part of aging. It needs to dispel the idea that there is a single pill that will solve everything and is just on the horizon. I thought that too when my mother got Alzheimer’s 25 years ago and……We need to emphasize that the environment alters how our genes behave and that needs to be in the visual.

4. Education needs to be done with different cultural and socioeconomic groups in mind and with the latest social science research on what works to change people’s habits. We are diverse in terms of cultural norms, race, gender, and economic status. Panels that address Alzheimer’s prevention, whether the target is medical practitioners or educators, need to have diversity on these committees. Also, too little of the social science research on how people change habits, or perceive ‘threats’ is being applied in any kind of education or policy.

5. The solutions have to be multi-pronged. The mainstream medical community is a great start as is targeting through existing educational channels in schools. As Fiver said, “But I'm really not willing to wait around.” We have to come out individually and as a group. It is imperative that we APOE4 folks, whether possessing one or two alleles, or working with a friend or family member with AD, need to become politically and socially active as SO many on this site already are. Fiver said, “I wonder if the obstacle to a national campaign against AD…is because those diagnosed generally withdraw from the public eye?” We can't withdraw. We have to get out there, educate our doctors, our students, our friends, and to use a metaphor, "come out of the closet."

Sorry this is so long!

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Re: Too soon for Alzheimer's Prevention?

Postby donbob » Sat Jan 05, 2019 6:36 pm

Indywoman wrote:I have been thinking about this topic ever since Julie first posted it and think a public campaign for risk modification is a great idea. Here are some thoughts in no particular order.....We have to get out there, educate our doctors, our students, our friends, and to use a metaphor, "come out of the closet."

Sorry this is so long!

.

This was a great post. Thanks for your excellent plan of action. Your work needs to be pinned for future and present members to see.

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Julie G
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Re: Too soon for Alzheimer's Prevention?

Postby Julie G » Sun Jan 06, 2019 3:54 pm

I agree! Excellent plan of action, Indywoman. Not surprisingly, the CDC only responded to my initial inquiry with a form letter telling me that the appropriate party would be getting back to me. They didn't :roll:. In the meantime, I've been asked to take part in a joint National institute of Health (NIH)/National Institute of Aging (NIA) committee focused on "Alzheimer's Genetics: What's Next?" I'm hopeful that THIS will be the perfect springboard from which to launch such a campaign. I still want to prioritize healthcare practitioners as our initial target audience. When the experts begin making the lifestyle = cognitive health argument, many of our critics will fall away.

I'd really like to create a committee to get this project off the ground. Please raise your hand if you'd like to take part. As modern day canaries in the coal mine, we MUST get this ball rolling.

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Re: Too soon for Alzheimer's Prevention?

Postby Fiver » Sun Jan 06, 2019 7:32 pm

Could we get in on this?

Called the National Neurological Conditions Surveillance System (NNCSS), the new registry of reported cases of MS and Parkinson’s disease will enable the CDC to identify research needs and foster collaborations among physicians, researchers, agencies, and institutions to improve access to care and, ideally, speed the development of new treatment approaches.

https://www.everydayhealth.com/multiple ... f99XaApRGs

https://www.cdc.gov/surveillance/projec ... html?rel=0
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Julie G
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Re: Too soon for Alzheimer's Prevention?

Postby Julie G » Mon Jan 07, 2019 1:14 pm

Could we get in on this?

Good question. It's very odd that Parkinson's and Multiple Sclerosis are the only two neurological health conditions targeted. It might be because surveillance of Alzheimer's (national data collection on dementia and caregiving) is already included in The Healthy Brain Initiative Public Health Road Map. FWIW, here’s some older data on previous Alzheimer’s surveillance.

I think we know enough to declare this a public health emergency and it's time to boldly roll out a prevention plan. While I think it could be improved upon, I generally like the CDC's curriculum. I'd love to partner with them or work through the NIH/NIA to make this information more broadly available.

Anyone interested in helping, please sign up here. I envision us starting by reaching out to these various agencies, letting them know about our non-profit, and offering to help disseminate the CDC's own Alzheimer's Prevention curriculum to multiple targets; starting with healthcare practitioners and ultimately to the public at large. WE can make this information compelling by featuring our members through video or audio clips, print ads, or brochures that link to an interactive website. They must have a budget we can tap into...

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Re: Too soon for Alzheimer's Prevention?

Postby Fiver » Tue Jan 08, 2019 7:49 am

I guess PD and MS have more of a geographical component, in terms of risk. Proximity to farms, latitude, etc. Might explain the inclusion in this study. As far as I know AD doesn't have a geographical risk....hmmmm...except areas of poor air quality. Mapping for AD is probably more about taking stoke of the population and allocating resources. My state has an older population so will see needs before some other states might. Just my guess.

Anyway, it sound like the perfect idea to coordinate with these groups!
Reading studies, need coffee. All I know: it's beautifully terribly complex. It's really a miracle that any of it works at all.

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Re: Too soon for Alzheimer's Prevention?

Postby mike » Tue Jan 08, 2019 11:56 am

They did mention that cost was a factor, and that they would like to add more diseases as money permits...
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Re: Too soon for Alzheimer's Prevention?

Postby Julie G » Thu Jan 10, 2019 9:38 am

This could be a positive sign. The BOLD Infrastructure for Alzheimer’s Act was just recently passed allocating $100 million over 5 years for a public health campaign focused on Alzheimer's. And, guess who's administering it? The CDC.

You can read Forbes' take here: The Anti-Alzheimer's BOLD Act Isn't. But It Could Be A Step In The Right Direction.

If this ends up being more surveillance, supporting caregivers, and education about dementia, it would be a shame. A truly BOLD initiative would begin with the broad dissemination of the CDC's own Alzheimer's Prevention Curriculum shared in this thread.


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