Alzheimer's and "Death with Dignity"

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NF52
Support Team
Support Team
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Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: Alzheimer's and "Death with Dignity"

Post by NF52 »

Bomag wrote:Another factor to be considered in Alzheimer's care is the cost. When my husband and I are no longer able to work (I'm the older at 70), we will have only social security checks and some equity in our mortgaged home. We have one child who is wonderful and like so many young people lives month to month.

I want to enjoy life as long as I can....I'm hoping reality will encourage legislation that makes chosen exit strategies easier to arrange.
Hi Bomag,

As a 67-year old with ApoE 4/4 I could be your genetic cousin. Like you, I want to enjoy life as long as I can. The exercise routines you mentioned in an earlier post are likely helping you greatly in that goal. Here's some encouraging research from 2019 about how exercise significantly slowed the rate of cognitive decline in people with elevated amyloid, which is often seen in people our age with ApoE 4/4 even when we have normal cognitive scores. Exercise May Protect Against Cognitive Decline in Adults With Elevated Amyloid-Beta

You may be interested in the helpful information provided on Advance Directives and talking with your adult child about your values and preferences from this site: Compassion and Choices. They have an excellent planning resource that is downloadable, and can easily be incorporated into the Advance Directive forms recognized in your state. While no state allows medical-aid-in-dying to those with a diagnosis of dementia, it is possible to put in writing your wishes for both quality of life and preventative as well as treatment options. You can see more here: Dementia Healthcare Provision

If you have interest in learning more about clinical trials which are seeking people our age with ApoE 4 and normal cognitive health, you may want to check out either the Alzheimer's Association's Trial Match website, which has about 250 trials that include both drug-study and non-drug interventions. Another resource, which is searchable by your location using the advanced search option, is the NIH resource Learn About Clinical Trials.

Full disclosure: I have been a participant in the Generation 1 study of a BACE-1 inhibitor vs. placebo for people with ApoE 4/4 ages 60-75. (A later study, Generations 2, included people with ApoE 3/4 and 4/4 in two different doses vs. placebo.) The study drug was ended in July due to some changes seen in the 3-6 month period in some participants (details expected to come out later this year), but I have still had follow-up visits and will eventually find out if I was on the placebo or the BACE-1 inhibitor. Clinical trials are neither feasible nor desired by everyone. For myself, it ws fascinating to have MRIs and PET scans, even if I only heard "your MRI is still normal". I found the study staff open to my personal choices and diligent about keeping me informed.

Finally, you may want to talk to a financial advisor. Your combined Social Security income will be taxed at a lower level than your current freelance income, and it may be that your Medicare costs could be lowered under some plans. Equity in your home, even if mortgaged, may be enough to borrow against without preventing your heir from benefiting from its sale eventually. Depending on whether you choose to stay in your current home, it may also be possible to move to an area with lower housing costs and leverage that mortgaged home into greater financial security.

You are likely to continue to use your brain for years more, so don't feel that you won't have time to change your financial picture. Here's to many years of enjoying life!
4/4 and still an optimist!
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