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Owned by Dementia

The Dementia Lifeboat

65 members • $15/m

Dementia Care Support & Expert Guidance.

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172 contributions to The Dementia Lifeboat
His Wife Knew a Year Before He Did
Richard, 67. Retired firefighter. He told me his memory was fine. His wife Linda had a different version. "He asks me the same question three times in an hour. He forgot our granddaughter's birthday party last month. He left the gas stove on overnight twice." Richard: "She exaggerates." This is the most common scene in my clinic. The patient says they're fine. The spouse is quietly terrified. And the spouse is almost always right. Why patients can't see their own decline: It's called anosognosia. Impaired self-awareness. And it's not denial. It's a neurological symptom. The same brain regions that are declining are the ones responsible for recognizing that something is wrong. The patient isn't lying. They genuinely believe they're fine. Their internal monitoring system is broken. This is why I always, always talk to the care partner separately. If I only listened to the patient, I would miss the diagnosis half the time. What I've learned from hundreds of these conversations: 1. The spouse noticed 1-3 years before the first appointment ↳ They waited because they hoped it was stress or aging ↳ They waited because the patient refused to come in ↳ They waited because they were scared of the answer 2. The first symptom is rarely overt memory ↳ It's personality change, lost initiative, poor judgment ↳ The spouse says "he's just not himself" before they say "he's forgetful" 3. The patient needs to be heard, not corrected ↳ Arguing with someone about their cognitive decline doesn't work ↳ I validate their experience and gently introduce the testing ↳ The data speaks for itself What happened with Richard: His testing showed moderate impairment in multiple domains. His MRI showed significant hippocampal atrophy. When I showed him the results, he got quiet. "I guess Linda was right." He wasn't angry. He was relieved. He'd been noticing things he couldn't explain and was scared to say it out loud. If someone you love seems different: Trust your instincts. You know them better than any doctor does.
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His Wife Knew a Year Before He Did
Jocelyn's Thursday Thought
When everything feels heavy, LEAN IN. Open up. Be raw. Cry, hurt, vent. Do that as much and as long as you want to. Do it until doing that becomes boring. And then...do something else. Write. Or paint or draw or act or sing. Build, invent, create, or dance. Speak, organize, teach, or lead. Do something about the heavy things in the world or about any area where you feel like adding something good. Just do SOMETHING. Do art. Do work. Do love. It doesn't matter what you call it. Just contribute in some way. In your way. This is how we move through the heaviness of life. It's how we make a difference on the outside and it's how we heal on the inside. Lean in. Then bring what you've got. And hey....thank you in advance for doing it. We need you. Have a beautiful week! I love you all, Jocelyn
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Jocelyn's Thursday Thought
The things outside of you are not as powerful as your mind believes. They do not ultimately control you. This doesn't mean they aren't influential. It means they don't have the final say in who you are, what you experience, or what you choose to do next. This is something I'm constantly reminding people (and myself.) But that's only part one. Part two is equally as important if not more important to understand. It's that you are much much much MORE powerful than your mind believes. You have so many options. So much control. So much more power than you realize. In any situation you have choices. In any circumstance you have power. You should be walking around feeling very excited about what's possible. Full of ideas about what you want to create in your life next. Lit up with desire about the life ahead of you. If your not feeling this way on the regular, your mind is just not seeing the truth. Mine forgets the truth too at times. And unfortunately this is the norm. Most people have it backwards. They think their life has to be great to believe it's possible to have a great life. So don't feel bad ...just decide to do something about it. Decide today to flip the script. If you need help..I'm here. Have a beautiful week! I love you all, Jocelyn
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11 Million Americans Do This Job for Free
There are over 11 million unpaid dementia caregivers in the United States. They provide an estimated 18 billion hours of care per year. The economic value of that care: over $340 billion annually. And nobody is taking care of them. I see it in my clinic every week. The patient comes in with their spouse or adult child. I assess the patient. I adjust medications. I update the care plan. Then the caregiver walks out looking more exhausted than the patient. What the research shows about dementia caregivers: They are 2x more likely to develop depression ↳ They have higher rates of cardiovascular disease ↳ They report worse physical health than non-caregivers ↳ They have higher mortality rates ↳ 1 in 3 report symptoms of anxiety The average dementia caregiver provides 30+ hours of unpaid care per week. Many provide 40-60. On top of their own jobs, families, and health needs. What breaks my heart: Most caregivers don't identify as caregivers. They say "I'm just taking care of my mom." They don't seek support because they don't think they qualify for it. By the time they reach burnout, their own health has already been damaged. What I've changed in my practice: I now assess the caregiver at every visit. Not informally. Formally. How are you sleeping? Are you eating regular meals? When did you last see your own doctor? Do you have anyone who can give you a break this week? If I can't take care of the caregiver, I can't take care of the patient. They're a unit. What every caregiver needs to hear: You are not selfish for needing help. You are not failing if you feel overwhelmed. Your health matters too, and neglecting it doesn't help anyone. Respite care exists. Adult day programs exist. Support groups exist. Asking for help is not giving up. It's the smartest thing you can do. The system is not designed to support you. That doesn't mean support isn't available. It means you have to look for it. And the people around you need to look for you. This is one of my biggest arguments for earlier diagnosis - bringing in the cavalry to support the patient AND their support system. Otherwise, we see family structures breaking down and increasing distance between aging loved ones and the rest of their families.
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11 Million Americans Do This Job for Free
I Told Her She Can't Drive Anymore
The hardest conversation I have isn't about diagnosis. It's about driving. Helen, 78. Former high school principal. Sharp personality. Strong opinions. Drove herself to every appointment. Her daughter came to see me privately the week before. "She got lost driving to the grocery store she's been going to for 30 years. She came home 2 hours late and couldn't explain where she'd been. I'm terrified but she won't listen to me." Helen's cognitive testing confirmed moderate impairment in attention, processing speed, and visual-spatial function. The exact domains you need to drive safely. I had to tell her. "Helen, based on your testing, I don't think it's safe for you to drive right now." She looked at me like I'd taken something from her. Because I had. Independence. Autonomy. The ability to go where she wants, when she wants, without asking anyone for help. For many of my patients, losing driving privileges is harder to accept than the dementia diagnosis itself. The car keys represent everything the disease is taking. What I've learned about this conversation after having it hundreds of times: 1. Don't delegate it to the family ↳ When the doctor says it, it carries clinical authority ↳ When family says it, it becomes a fight ↳ The family has been arguing about this for months before they reach me 2. Be direct but not cold ↳ "Based on your testing, driving is not safe right now" ↳ Not "you can never drive again" (some patients improve) ↳ Acknowledge what you're asking them to give up 3. Have a plan before you have the conversation ↳ Transportation alternatives ready (rideshare, family schedule, community resources) ↳ Retesting timeline so they have something to work toward ↳ Occupational therapy driving evaluation as a next step if borderline 4. Document it clearly ↳ Many states require physician reporting ↳ Liability exists if you know and don't act ↳ The medical record protects everyone Escalating can almost always be avoided. I can count on 2 hands how many times I've had to intervene with licensing rather than have a patient voluntarily retire from driving.
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I Told Her She Can't Drive Anymore
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@laura-wayman-7185
Dementia Care Support & Expert Guidance.

Active 14h ago
Joined Dec 18, 2024
United States
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