I was on Farcebook earlier today, and caught not one, but two ads using the hashtag #dementiaawareness. (I was looking for something else.) I reported them to Farcebook as lies, and they disappeared, so sadly I can't share screenshots.

But basically, y'all know the drill: "Did you know you can cure dementia with this one simple thing?" I had to double-check—yup, it was "sponsored content." Someone paid to put it there.

Clicked through to a long rambling bunch of yadda yadda, coming from a Very Important MD with Very Big Credentials (you can read that in tRump's voice if you wish…), who has seen through the falsehoods of conventional therapies. Yes, all of the side-effects which the (white, male, pretty-boy) doctor lists for donepezil are truthful. Similar padding and truthful (but partial) information about other established medical interventions.

After pages and pages of half-truths, we get to the point: all you have to do to permanently reverse and cure dementia is buy our cannabis gummies! Here is a picture of Jane Doe with dementia, and here is a picture of Jane Doe after just one week taking our gummies! Wow!!!

Alz.org is the website for the US based Alzheimer’s Association. They focus primarily on Alzheimer’s, but also contain some material on other forms of dementia.

The site interface is designed to be easy to navigate for those who are not medical professionals, but digging through some of the menus will get you to refereed journal articles and other professional resources, as well as granular suggestions for caregivers seeking to offer dignified, appropriate levels of support for loved ones.

Of special interest: their phone hotline, available 24/7. From my experience, they seem to have a vast phone-tree of specialist consultants—so you can call in to vent, ask for tips and strategies, or to get pointed in the right direction for independent research.

I was especially impressed with their ability to get me connected to local resources—lists of adult daycare, nursing homes & memory care, checklists on how to evaluate offerings, and so on. So often, I’ve asked for help through insurance company reps, or doctors’ offices, or dug up stuff myself online—only to find it’s outdated or contains information that isn’t useful.

It would be nice to get to know each other as we all wander in here.

I tried posting on a Discord for people with/caregiving for those with dementia. Got a nibble of interest, got pinned by the mod, wrote out detailed instructions on how to get on Lemmy and find us… Possibly the geek level killed interest.

The Discord is pretty quiet, except for incoming bot posts, an IFTTT feed directly from r/dementia to the Discord. (It's one-way, we can see them on Discord, but they can't see us.) Is it worth posting in Reddit, do you think? I'm wondering if I even mention Lemmy, whether I'll get permabanned from Reddit.

I've been checking for new posts here but not actively trying to create anything new the last week or so because I've been spending most of my available free time elsewhere on Lemmy and Beehaw trying to help prepare for the possible onslaught of new ex-Redditors expected yesterday and today.

As they (hopefully)make their way to Lemmy, I hope they find us and join our community, too.

Please feel free to chat about whatever it is you need help or support with, or post articles of interest to the community if you see them.

I am resisting the urge to do too much after being down for over a week with a sinus infection/migraines. My husband was working a bunch of overtime the whole week, so had to extend his usual caregiver duties to keeping this whole ship afloat while barely being home enough to sleep and eat.

I'm formulating a plan to do the most important of the cleaning that got missed (planning is still one of my strengths so I happily contribute in that way) and I'll do a few things but I can't overdo it yet.

Hubby and I are also reading a book together so I am going to do that when I need a break.

I hope everyone is taking care of their physical and mental health today.

Thank you, ZenGrammy! I don't have the time or the tech chops, and was hoping someone would start a community like this. I'm a Reddit refugee who was active on r/Dementia, r/Alzheimers, r/Caregivers, etc. (Edit: and a handful of Discords, an Alz.org Zoom group… lots of support!)

My sweetie—I call her my "Beloved Dementor"—was misdiagnosed for a good decade with psych problems. She does have those (anxiety, depression), but PCP & therapists brushed off refereed medical journal articles I tried to show them, as well as the info that Alz runs in her bio-family.

She's only at roughly stage 4 cognitively. But the effort of masking for so many years, the Alz erosion of executive function (motivation, cause/effect reasoning), the personality reversal from outgoing to shrinking violet—made her decide to stay abed for several years. Lost muscle tone from that, plus Alz-related apraxia and a Parkinsonian tremor.

Inevitably she lost ability to walk, fell, and from ER went to a Roach Motel of a skilled nursing facility where she flunked out of rehab. Incontinence and reliance on a Hoyer lift make it impossible for me to adequately care for her at home—my arthritis and age (pushing 70), inaccessible house, lack of backup community if I fall ill, shortage of aides, and her self-imposed social outlets all point to "nope, not gonna work, at least not longterm."

She's still my sweetie of 26 years. I visit daily. &

Best resources: Alzheimer's Association (Alz.org), and the book The 36-Hour Day.

I created this community so that everyone who is affected by neurodegenerative diseases like Alzheimer's Disease, Parkinson's Disease, ALS or muscular dystrophy --or of any kind-- can gather in one place and support each other. I know it’s a long name but how do you shorten it and catch all those who could use it?

I was born into a family with Huntington’s Disease and I tested positive for the gene in 2018. I cared for my mother at home as she struggled with it for three years until her symptoms were too far advanced for home care. I continue to watch her decline from afar in a local nursing home that has a Neurocare Unit these days as I prepare for the end stages of her disease to take hold. I try to tell myself that I can do some pre-grieving, pre-preparing, for such a thing- but I don’t honestly know if I am really doing myself any good or just doubling my grieving time.

I am technically pre-symptomatic physically and monitored by multiple doctors for changes. I have hope for my future health sometimes when I read about new trials or drugs coming out. I’m just racing the clock on that I guess. I have an advantage my mother and her mother and previous generations did not have, which is genetic testing in time to face it head on and treat symptoms immediately.

I will link some info about Huntington's Disease https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/. It's not pretty because I haven't figured out how to do thar on Lemmy yet but I'll get there.

When you introduce yourself you should feel free to do the same. We can all learn from each other here.