
September 21 is World Alzheimer’s Day. Since beginning The Memories Project in 2012 in memory of my father, I’ve followed the developments in Alzheimer’s research and support for caregivers.
There have been some notable achievements when it comes to developing blood tests that can accurately detect Alzheimer’s. More convenient, accurate, and affordable testing means more people can get diagnosed earlier, when the current treatments have the best opportunity to be effective.
As far as medications, it’s been more of a mixed result. Some potentially promising drugs have failed, while other medications have had a bumpy rollout. Limited effectiveness, side effects, and costs are factors to consider, but I do understand those with Alzheimer’s and their families wanting the right to try such treatments.
I’m not so optimistic that I think we’ll have a cure for Alzheimer’s in my lifetime. For my sake, as someone with a copy of the APOE4 gene and Alzheimer’s common on both sides of my family tree, I do hope we’ll find more effective and accessible treatments. Something that preserves more of a person’s cognitive function, so they can continue to live independent lives would be a gamechanger.
And we must think beyond just pharmaceutical solutions. Research has shown that lifestyle changes can make a difference in preventing or delaying dementia. Unfortunately the government has cut funding for some Alzheimer’s studies that are needed to understand the differences in how the disease develops across gender, race, and economic levels to inform effective interventions and prevention recommendations. Those who care about developing effective treatments for Alzheimer’s and other dementias need to vote for officials who believe in science and funding research. For trustworthy information on dementia research, check out Being Patient.
If you want to get involved, sign up with the Alzheimer’s Impact Movement for government advocacy and the Alzheimer’s Prevention Registry to participate in research studies. I’ve been a member of the registry since 2012. I also am a member of the Brain Health Registry and participated in an Olfaction Study and an ongoing study where I complete surveys and brain games every six months. These are simple yet meaningful ways to support research efforts.
Caregivers continue the fight for better support. There are several organizations who advocate for caregivers. Beyond AARP and the Alzheimer’s Association, I’m a fan of Caring Across Generations. I also have a few resources that I’ve created, including Respite Care Share and Caregiver Vent.
The seemingly slow progress can be frustrating for those who are currently living with Alzheimer’s or other dementias. Instead of feeling helpless and hopeless, I try to support the community through sharing my family’s story.
Read The Reluctant Caregiver, my award-winning caregiving personal essay collection.
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