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Owned by Dementia

The Dementia Lifeboat

65 members • $15/m

Dementia Care Support & Expert Guidance.

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178 contributions to The Dementia Lifeboat
Jocelyn's Thursday Thought
If you could talk to your past self, what would you say? What would you tell the you that was brand new at the thing you're very seasoned at now? What would you say to the you who was so worried about the thing that turned out fine? What would you tell the you who didn't see the challenge that was on the way? If you're anything like me, you'd tell all 3 of those versions of yourself something like this: You can do it. It's going to be fine. It'll be hard, but you'll be just fine. I'm so proud of you. And no matter what happens, I will love you. And while we can't go back and tell our past selves this, we CAN tell our current selves because of course it applies to us now as well. You can do it. It's going to be fine. It'll be hard, but you'll be just fine. I'm so proud of you. And, no matter what happens, I will love you. Promise. Have a beautiful week! I love you all, Jocelyn
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A Dementia Diagnosis Doesn't End Your Life. It Redirects It.
I sat down with Daniel Brown from Simon Health recently and he asked me: "When families are overwhelmed by a diagnosis, how do you help them move past the anxiety?" My answer surprised him. I don't try to eliminate the anxiety. I try to redirect it. Anxiety after a dementia diagnosis is rational. The fear is real. The grief is real. But anxiety without direction becomes paralysis. And paralysis is the worst outcome because it wastes the time that matters most. What I tell every family after diagnosis: 1. The diagnosis is not the disease ↳ It's information. Information gives you power. ↳ Before the diagnosis, the disease was already there. Now you can fight it. 2. Focus on what you can control today ↳ Exercise. Sleep. Social connection. Blood pressure. Hearing. ↳ These interventions work best early. Every week counts. ↳ Give the patient something to DO, not just something to feel. 3. Join a community ↳ I push families toward support groups the same way the addiction world uses AA ↳ The camaraderie of people going through the same thing is different from family support ↳ It reduces isolation, which is itself a risk factor 4. Don't wait to plan ↳ Legal and financial planning while the patient can participate ↳ Advance directives. Power of attorney. Care preferences. ↳ This is not giving up. This is giving your future self a voice. The shift I've seen in my career: Dementia used to be treated like cancer was in the 1970s. Nobody wanted to talk about it. Clinics were in basement corners. The diagnosis was whispered. That's changing. And it needs to change faster. A diagnosis is not a death sentence. It's the start of a different kind of fight. Link to the full conversation is in the comments. šŸ“Œ Follow Reza Hosseini Ghomi, MD, MSE for honest guidance through the hardest conversations šŸ’¬ If you've been through a diagnosis with a loved one, what helped most?
A Dementia Diagnosis Doesn't End Your Life. It Redirects It.
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Here is the link to the conversation: https://www.simon.health/post/resilience-and-behavior-change-with-dr-reza-ghomi
What Does Dementia Look Like in Real Life?
In our newest episode of Dementia Lifeboat: Port of Call, Laura and Jocelyn sit down with Cindy to walk through what her husband’s new shifts actually looked like in real life. Not the clinical version. The actual lived experience. The experience that many of you have lived yourself: Arguments that come out of nowhere Moments where they feel like themselves again… and then suddenly don’t Questioning yourself: ā€œAm I handling this right?ā€ One of the most powerful takeaways: Dementia isn’t just memory loss. It’s changes in behavior, emotion, perception, and the ability to process the world in real time. Interested in hearing Cindy’s story? Please listen to our latest episode: What Does Dementia Look Like in Real Life? YouTube Spotify Apple Podcasts
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Jocelyn's Thursday Thought
The skill of feeling your feelings is tough to master because it's tough to describe. It reminds me of trying to explain to my kidsĀ how to rideĀ a bike. You just keep trying and your body will figure it out eventually. So if you are trying to get better at allowing your emotions instead of buffering them away with food, alcohol, shopping, scrolling etc... but you are questioning the effectiveness of your efforts, try doing the opposite for a minute. Try not to feel ANY feelings at all. Block them. Tighten up against them. Really push everything away. Don't allow anything including resistance. Then after a minute or so, do the opposite. Allow anything that comes up. Relax into it. Allow it to be there with you. Repeat this alternating process 3 or 4 times. Block for one minute. Then allow for one minute. Repeat. I did this experiment myself while I was riding in an Uber to the airport when I was feeling particularly anxious,Ā and I found that when IĀ blocked the emotions, my mind also attempted to block other sensations like the cool air of the air conditioning, the sensation of the hot sun on my arm, the tingle of my freshly applied lip glossĀ and everything else. It felt awful. Empty. Sharp. Then when I allowed myself to relax, I found the release and opening up created a softness. The emotions and sensations moved through me with ease and although the anxiety turned to worry and was still present for the remainder of my ride, it became a mere inconvenience rather than an intolerable emergency. Kinda made me wonder why I had often worked so hard NOT to feel it? Give it a try... It might surprise you too. Have a beautiful week! I love you all, Jocelyn
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We've Been Treating Alzheimer's All Wrong
A paper published recently said what I've been thinking for 15 years: We've been treating Alzheimer's as one disease. It's not. It's a tangled mix of biology, aging, inflammation, vascular damage, metabolic dysfunction, and genetics. All converging differently in every patient. That's why drugs targeting a single mechanism keep falling short. Lecanemab slows decline modestly in some patients. Donanemab shows similar results. Both target amyloid. Both cost over $26,000 per year. Both carry significant side effects including brain edema and swelling. And for most patients, the improvement is so modest that families can't tell the difference in daily life. I've spent my career at the intersection of clinical practice and technology. Here's what I believe: The future of Alzheimer's treatment isn't one drug. It's a combination approach. Metabolic optimization (blood pressure, cholesterol, blood sugar) ↳ Targeted anti-inflammatory therapies ↳ Amyloid reduction for the right patients at the right time ↳ Lifestyle intervention as medicine, not afterthought ↳ Technology that identifies patients earlier and monitors them continuously This is exactly why I built tools for clinical workflow automation. Because the complexity of managing multiple interventions across a large patient population can't rely on human memory and manual tracking. The practices I work with that are closing care gaps at scale are doing something the pharmaceutical industry hasn't figured out: They're treating the whole patient, not just the pathology. And the infrastructure to do that efficiently didn't exist until we built it. šŸ“Œ Follow Reza Hosseini Ghomi, MD, MSE for Alzheimer's care that goes beyond the headlines šŸ’¬ Do you think the pharmaceutical approach to Alzheimer's is working? Citation: Yoo J., Multi-target-directed therapeutic strategies for Alzheimer’s disease: controlling amyloid-β aggregation, metal ion homeostasis, and enzyme inhibition, Chemical Science, 2025.
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We've Been Treating Alzheimer's All Wrong
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@laura-wayman-7185
Dementia Care Support & Expert Guidance.

Active 4d ago
Joined Dec 18, 2024
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