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Hey all !


How effective have you guys found PET scans in early diagnosis of ALZ / Dementia? I'm trying to book a scan because of family history but insurance doesn't cover.


Also, not sure I would want to know if I am at risk because there isn't much I can do about it?

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If you are considering a symptom free "just in case" scan, one thing you may want to consider is keeping it out of your formal medical records (don't use insurance or your regular doctor). If you ever apply for certain types of medigap supplemental or LTC insurance, having that scan in your records may cause an increased premium or coverage denial even if it's completely clear.
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Geaton777 Oct 2019
A great point!
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What are you going to do with the info. Worry every time you forget someones name. Worry every time you have to search your brain for that "word" ur looking for. Thats a sign of aging not Dementia. ALZ is hereditary. It runs in my stepdads family. Dementia, in my opinion, is caused by other factors. Smoking, drinking accessively, head trauma, some medications we take, like Cholesterol Meds. Physical diseases like Parkinson's.

Whether I get Dementia or not, I have started planning. I bought a 2 drawer Metal cabinet. I have all our investment info in there. All husbands retirement info because he has an ongoing insurance policy. Notes in the folders on how to handle things. Phone #s. Important papers like wills. Soon, we will be getting our POAs together. All my girls need to do is look in one place.

We have invested some money by cashing in Bonds, adding inheritances, and my pension that had to go into an annuity. We are just allowing it to sit. Hopefully, this will help with any care we may need.

I think thats all any of us can do.
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cherokeegrrl54 Oct 2019
Youre right. My mom has taken care of all these things, even prepaid her burial. It will make it much easier on me because of all the work and planning she has done. Too bad so many others dont do this!
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I understand what you’re saying. My mother had breast cancer and dementia. Dad had spinal stenosis and heart disease. Grandparents had cancer. And I don’t know who had what in the “old country” before they all immigrated here in the 20’s. My mom’s oncologist said I didn’t need to have the test for breast cancer which apparently, or at least at that time, wasn’t covered by insurance. And truthfully, if I had ”just in case” tests for all that stuff, I’d go broke.

My PCP has told me to be aware of what’s going on with me. I go to her yearly and she and I will explore anything we think in suspicious. I won’t live in fear or the future, but I will be proactive about anything I think is weird.
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kvmalek Oct 2019
Hey Ahmijoy - if there is something "weird" isn't it too late at that point? the system in the united states is unfortunately too reactive I find
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The biggest advantage to knowing risk factors is that you CAN do something about them, specifically examining your diet and making changes that eliminate foods now being discovered to contribute to dementia, as well engaging in activities that involve physical and mental exercise.
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kvmalek Oct 2019
right ; but that will just delay, correct?
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Kvmalek, I don't know and haven't read enough about these issues to know if lifestyle changes recommended by medical pros will delay or actually affect if not alter the progression of early diagnosed dementia, but I think a lot would depend on the type of dementia and the stage, and perhaps other physical underlying factors such as the overall health of the individual.

Even if addressing changes now won't prevent dementia, I'm guessing, w/o having researched the issue to the extent necessary, that they might mitigate the intensity.   And, living better and healthier is still better than the alternative.

I can understand the fear and anxiety inherent with these kinds of concerns.   I went through that when my sister died of cancer, getting tested, worrying and worrying more especially there's a history of cancer in our family.  Then I just decided that I wasn't going to spend the next phase of my life worrying, but would take better care of myself and hope for the best.  That was over a decade ago, and I'm still here.


Apropro of this issue, I found an interesting article from the Environmental Health Perspectives (on which I've also posted under the Discussion section):

https://www.agingcare.com/discussions/aging-dementia-and-related-factors-clinical-studies-453440.htm

The article itself is at:
https://ehp.niehs.nih.gov/doi/10.1289/EHP4579
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So, family history is no guarantee you will inherit the gene for it. If it were me and a PET scan is "affordable" then I might consider it. One good reason to know is to enable proper planning for yourself and LOs. Also, medical science may not have a better therapy or "cure" now, but it makes huge leaps in advancements every year. I'm 60 and between now and age 70 it is quite possible they discover something that delays or cures dementia. What if a medicine that could help only worked if you took it prior to showing symptoms? Living in denial will just add to the profound impact of dementia, should you get it. I encourage you to be mature and rational, which means if you are able to find out, do so.
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Have you talked to your Primary doctor? If you have concerns they can refer you to a Neurologist or better a Neuropsychologist and they can begin testing. If a PET scan is warranted I would imagine insurance would cover it.
I would start with "baby steps" with the testing and as you and or the doctor feel the need to do more testing then go for it.
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