The Sun'll Come Out, Tomorrow
Balancing enthusiasm for progress amidst a still sucky reality.
Well hello there! I promised you a severely jet-lagged post this Wednesday and here it is!
I have one more disclaimer before we get into this week’s post. I had planned to dive into some unforeseen aspects of Nina’s assisted living facility that looked like bonuses but turned out to be the opposite. Then, Swedish Death Cleaning and it’s sequel got in the way. I promise to get there soon. The topic has been on my mind as a few friends are making this difficult transition with parents, and I want to share anything that can help in that process. Before I go there, however, I wanted to share something that’s been marinating in my head for a while.
Beneath the Splashy Headlines
Travel offers up so many opportunities for gaining different perspectives. While completely ignoring the actual news, I find myself going deep on things I would otherwise blow right past.
Among them was this article in the The Economist: How to Reduce the risk of developing dementia: A healthy lifestyle can prevent or delay almost half of cases. (I apologize because it has a paywall, but somehow on some platform I got by it). The headline itself is nothing new to readers of the Mothership, as we have chatted on these findings and recommendations several times, most thoroughly in A Fighting Chance. The news hook for this particular article was the Lancet’s addition of two more modifiable risk factors (vision loss and LDL cholesterol) that can be addressed to reduce the risk of developing Alzheimer’s and dementia.
What struck me more than the research findings were the comments at the end of the article. They revealed something I, too, have felt, something that simmers amidst all the good news about Alzheimer’s. It is this: It’s still bad. All the advances and advice don’t change how hard it is for people touched by the disease right now.
LIGHT AHEAD, BUT THERE’S STILL A TUNNEL
Even while my MO is to keep things light, I am often reminded that this topic and this experience is anything but. Yes, there is much positive news, but interpreting that very real message of hope to mean that this disease is fully preventable or reversible is neither true nor helpful.
On the clinical front, there is a blood test to detect biomarkers for the disease, which, when fully accessible, will help for early diagnosis (and more effective treatment), but it is not yet FDA approved.
The two drugs that treat the disease in its early phases, by reducing plaques in the brain (vs managing symptoms) are currently delivered by IV infusions and not widely accessible.
The modifiable risk factors, in total, can prevent or delay up to 45 percent of cases. That’s huge! Getting there, however, means addressing all factors over the course of a lifetime. Considering brain changes may start 20 years before symptoms manifest, reaping the full benefit of lifestyle modifications requires a long runway. Many people commented that they or their loved ones had the disease despite living healthy, active lifestyles that hit all the recommendations.
Even if 45 percent of all the people who fully adhere to the recommendations don’t bear the full brunt of the disease, that leaves more than 3 million in this country who do. In Ron Burgundy speak, that’s still, “kind of a big deal.”
NOT A LAUGHING MATTER
People also took issue with the category heading of the Economist article, which read like this: “Science & technology | Keeping your marbles”
That hit a nerve with me as it did with other readers. “Keeping your marbles,” while catchy, trivializes the disease, and plays into the stigma that still exists. People with Alzheimer’s have a real disease. They aren’t stupid or crazy or slow or soft or any of the things they often feel and are ashamed of when their symptoms develop. Moreover, they didn’t do anything “wrong”; but, that’s sometimes how it feels when people with the best intentions share news of a miracle diet or regimen that prevents or even reverses Alzheimer’s. It makes you feel like you missed something, that the person really did do something wrong to usher in this disease, and plays into the shame historically connected with dementia. That does...not...help.
CHEERING THE WINS, WHILE KEEPING IT REAL
So, while I am all about celebrating the advances and being inspired by a brighter future, I am in no way minimizing what people with Alzheimer’s are facing right now. The same goes for caregiving. In this post Tanya Reynolds shares the challenges of finding care for her husband with younger onset Alzheimer’s while working full time. Finding the care they need is not just expensive, it’s nearly impossible. If you are among the 11 million unpaid caregivers for someone with Alzheimer’s in this country, the challenges are real and relentless.
It is enormously helpful to approach caregiving with a sense of humor and a bottomless reservoir of patience and compassion. It’s incredible when you can lace your care with creativity and clever ideas that spark a bit of comfort of joy, that reinforce a sense of purpose and belonging. It is also true that we can’t show up at the peak of our A-Game every day. If you are caring for someone with dementia, you’re going to make mistakes and have days where you are crabby and tired and impatient. That’s ok. Showing up and giving the best you’ve got in that moment, whatever it is, is enough.
HOW TO INSPIRE AND SUPPORT
I recently shared my thoughts about reconciling optimism for the future with acknowledgement of the present with an Alzheimer’s Association representative. He said it’s a common issue in the community he serves. Their solution is to emphasize and explore all the things people with the disease can still do and enjoy after diagnosis, and at all stages thereafter. In his own chapter that involves partnerships with organizations to provide outdoor and indoor recreation, artistic experiences, community engagement and social connection.
If you really want to help someone dealing with Alzheimer’s, here are my thoughts. Bear in mind that these recommendations come from my own experience and observations, with zero professional counseling cred. Sharing positive news is great, especially if it offers new, actionable knowledge or a helpful perspective to someone stuck in the struggle. Within that, however, leave space for compassion for the reality they are actually experiencing. Take the time to learn about the things people can do and enjoy at their particular stage of the disease. Find programs that help people with dementia and their caregivers engage with the world instead of being isolated from it. Seek and share any form of caregiver respite. You don’t have to offer a “solution” especially if there is none; but you can always just be there to listen, which is itself a huge support.
TALKING THE WALK
Speaking of support, next week we’re fully jumping into the Walk to End Alzheimer’s because it is going to take over my life until out local walk happens on October 5. Five years ago, after Nina had passed away, I leaned into the cause as a way to do something to combat a disease around which I had felt zero agency. Even in a few years, the positive vibe of the event and the cause has ramped up radically, largely because of the aforementioned advances towards an eventual cure. The sense of hope has brought people outo of the shadows to share their stories and connect. I want to do my part to keep and increase that momentum, while also cheering on everyone at each stage of the journey. The Walk helps make that happen.
TO THE UPPER VALLEY PEEPS
If you’re local, hit me up! We’ve got a job for you on the day of the event and leading up to it, and there may even be a purple bandana in it for you. If you’ve got a local team or business Go Purple to show your support during the week before the event, Sept 28-Oct 5. (Hit that button and I’ll set you up)
And by all means, join or support our team if you can!
TO THE FARAWAY PEEPS
Well of course you can get in on it! Find one of the 600 plus walks across the country near you! Join as an individual or a team and walk virtually, or support an individual (like me) or a team.
“Keeping your marbles” OMG - that’s awful! WTF. Thanks for this post, Edie. What stood out to me the most was the part about getting tested for biomarkers of the disease. I believe there are already some tests nowadays that you can take? But maybe I’m wrong. Have you ever taken a test? If not, would you? I always think about that since my mom has Alzheimer’s and her mom had it too. I read mixed things about whether it’s hereditary or not. And to be honest, I’m not sure if I’d want to know? My plan is to focus on living a healthy lifestyle, regardless… Curious how you navigate this!
Edie - I am really finding your articles to be so helpful. Thank you for your work bringing this information to the surface - both the good and not so good stuff. For my mother, Karen, she is at the stage where she knows she is not remembering stuff - and - it’s hard to just not go into joking mode because it hurts so much to see Karen be so afraid.