Posted 1/30/23
Where there is no guidance, a people falls,
but in an abundance of counselors there is safety. -Prov. 11:14
(Reader warning: this will be in a shotgun format. There is so much to share that I want to write 20 articles breaking it down, but, alas, I don’t have time. 🙁 )
Hi all! I hope all is well in your respective worlds. 🙂 Life is about the same here. Mom is doing about the same as she has been for the least month. She successfully fought off the pneumonia that really had us concerned and has avoided COVID which has been present in the nursing home more than visitors for the guests ( 🙁 ). I am iced in my house, so it will be tomorrow before I get to see mom again… It has been 6 days, likely the longest I have missed in the time she has been in the nursing home, since I have been. Part of the time was I was blessed to be able to go to the 2023 Alzheimer’s Association Leadership Summit in San Diego. It was 3 solid days of training, encouragement, support, and more training. I only had about 1.5 hours “free” for tourism purposes, so I ran to the harbor and snapped a bunch of pix (see below).
Here are some takeaways:
- We are in a historic time in research. Lecanemab aka Leqembi is ground-breaking for several reasons. It has been shown, on average, to restrain the advancement of the disease, on average, by 27%. To put a finer point on this, had we had that available for mom, being 14+ years into the disease, she would have been bought ~3.7 years of pre-clinical or early time. Think we would be thrilled with 3 DAYS more of that time, looking back??? Yes. 3.7 years is staggering. AND, that is based on only 18 month’s of data as to the efficacy. Wait until we look at the 5-10 year data!
- Amazingly, Aducanumab and Lecanemab are the first 2 drugs to pass FDA approval that Medicare decided NOT to cover. Wait…technically you could go to an ADRC and join a study to get this drug . However, 2 problems: 1. The studies are double-blind so you MAY only get a placebo (!)…oh, and there are few if any ongoing studies taking new patients. This is a tremendous point of advocacy need. Please reach out to your US Congressfolks and lovingly demand a fair coverage of this medicine class. See, the whole class of drugs has been given this albatross of requiring these extra hoops called Monoclonal Antibodies. Hence the “-MAB” at the end of the names. They are expensive, but would not nearly be the most expensive drug being covered. Here is a super easy way to advocate for this treatment: LINK I don’t ask for this kind of advocacy every article, but I should…
- There are millions of folks who have this disease. Yup…I already was aware…but seeing folks from every state and other countries and sharing stories…sigh. The disease isn’t as picky where it lives and I am.
- There are many folks that are serious fighters. I fight. I do…but some of these folks made me look like I had never heard of the disease. Take a look at Super Dan: https://www.denver7.com/news/national/triathlete-trains-for-ironman-after-early-alzheimers-diagnosis
- Want another example? Try Tony Gonzalez (and his bride Kori) https://keyt.com/health/2021/09/21/battling-dementia-at-47-longtime-santa-maria-media-personality-hoping-to-inspire-people-and-bring-awareness-to-disease/
- There were also several other speakers with similar stories including a wonderful woman named Myra Garcia who is currently participating in the donanemab trial ( a similar, promising drug) . It is a drug with the awesome and Medicare-dreaded -MAB at the end…so we are fighting for access to this drug too… Here are some links about her advocacy: LINK and LINK
We talked in a host of ways about how race and Social Determinants of Health lead to an increase in the disease. According to the U.S. Department of Health and Human Services, “Social determinants of health (SDOH) are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.” This is a big topic that needs an emphasis. According to the 2022 Facts and Figures publication, here are some examples of ways these factors play out:
- Military veterans and/or those who have had a Traumatic Brain Injury have a much higher rate of the disease.
- Older Black Americans are about twice as likely to have Alzheimer’s or other dementias as older Whites.
- Older Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older Whites.
- Hispanics, Blacks and Native Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.
- Almost two-thirds of Americans with Alzheimer’s are women.
- According to the National Down Syndrome Society, about 30% of people with Down syndrome who are in their 50s have Alzheimer’s dementia. About 50% of people with Down syndrome in their 60s have Alzheimer’s dementia.
- Living alone with dementia may be a particular challenge for certain subgroups, such as lesbian, gay, bisexual and transgender (LGBT) individuals, who may experience greater isolation for reasons ranging from social stigma to a diminished social network of available family or friend caregivers. In addition to this, about one in 13 lesbian, gay or bisexual (LGBT) seniors in the United States are living with dementia. Dementia rates for the LGBT population are 7.4 percent, compared to about 10 percent for the general population. However, this community is much less likely to pursue a diagnosis, so this number is indicative of a much higher reality.
- Neighborhood stability, access to healthcare, education level, and general affluence show many clear relationships with who gets the disease and how their treatment plan evolves.
Other important things: We talked, as I try to often here, of the need to focus on what is remaining instead of what is gone. We talked a great deal of the need to increase education and to push back stigma. There are still people afraid to share their diagnosis…or to get a diagnosis…out of fear of being shunned and/or mocked. It is hard to believe, but it is very common, even among peers. We also talked a great deal about our stories, how to share them, and how to listen better. Empathy, something I, as a Fixer”, sometimes fail to show even as I feel it more than anyone knows, was discussed from a dozen angles, and rightly so. We laughed, we cried, and yelled…and we all left with notebooks…and hearts full.
I will work on some more specific take with items over the next few weeks, but this was a start…knowing I missed 1000 more things I should have shared.
Bottom line: We need more volunteers. Many more. We need Walk to End Alz walkers, clinical trial takers, education leaders, and faith-based advocates. We need bold, strong folks and we need less bold, less strong ones too. We need community members from every demographic to champion the cause since the disease doesn’t care who it strikes next. We need money. We need fair access to these new meds. We need you.
Thank you all for enduring this article’s style. The subject matter, however, is a super important group of topics that will be present in my work forever…or at least until we finally #EndALZ
Stay tuned for more to come 🙂
