Where can I find a support group for caregivers of people with non-Alzheimer's dementia?

9 answers | Last updated: Nov 27, 2016
A fellow caregiver asked...

Where can I find a support group for caregivers of people with non-Alzheimer's dementia? My grandmother's medically non-specified dementia very clearly does not fit the pattern of Alzheimer's Disease, which makes it hard for me to find information and people I can relate to.

Expert Answers

Paula Spencer Scott is the author of Surviving Alzheimer's. A Met Life Foundation Journalists in Aging fellow, she writes extensively about health and caregiving; four of her family members have had dementia.

As you've discovered the majority of dementia support groups target the caregivers of people with Alzheimer's Disease. The good news is that more and more groups of other types are being created (such as for people with early-onset dementia, Lewy Body Dementia, etc.).


Even though your parent has non-Alzheimer's dementia, your local Alzheimer's Association can be a good place to start looking for a support group because they tend to have very good tabs on local resources on dementia generally. You can also ask your local area association on aging. Local hospitals or long-term care facilities may also run or know about programs.


It's great that you're looking for a support group because this can be a huge source of stress relief as well as a place to learn new ideas. Even if you aren't able to locate one specifically for your loved one's type of dementia, please do try a general dementia or even Alzheimer's-specific support group. Although there are differences in the specific issues faced, there are also many common bonds. What sometimes happens is that participants discover others in the same situation and branch off to form their own support network.

Community Answers

A fellow caregiver answered...

When you, the "expert", are asked for specific advice or an answer, you do yourself a disservice to try when you really don't know the answer. Just say you don't know but will do your best to find out. But really, you should be able to point us to at least "one" dementia support groups that will not subject us to reading everything in this thread to try to discern an answer to our questions.

Antoinette tong answered...

Listening and learning, reading, helps us get thru the 24x7 at home, care. Alone, but online help is there. Antoinette Vos

Pamsc answered...

For Lewy Body Dementia, see: http://lbda.org/content/local-lbd-support-groups

Geri hall answered...

This is such an important question as the care of people with non-AD dementias can vary enormouisly from care of someone with Alzheimer's. Not only are the symptoms different, but medical approaches must be appr4oached differently. A dementia is not a dementia is not a dementia.

As someone recommended the Lewy Body Disease Association, there are online and "live" support groups for other dementias. The probalem is we don't know the illness affecting your loved one In addition to Lewy Body support there is support for people with frontotemporal dementias. There are a gorwing number of live support groups throughout the US. They meet loosly through the Association for FTD (www.theaftd.org/). There is also an FTD support site. If you Google that term you will find it. Finally Yahoo has a numer of FTD support groups online (I own one).

Those are the two most common non-AD dementias. If you need help for another diagnosis (CBGD, PSP, visual variants, progressive aphasias, etc, please write back and tell us. If your loved one has vascular dementia it can present similar enough to AD or FTD to attend thoise meetings.


Geri R Hall, PhD, ARNP, GCNS, FAAN Advanced Practice Nurse Banner Alzheimer's Institute

Thegrandchick answered...

Thanks, Geri. I'm the one who asked the question in the first place. The problem all along has been that my grandmother's dementia doesn't seem to resemble any known kind of dementia at all. One of her doctors has now said "Well, I guess you can call it Alzheimer's, but very atypical Alzheimer's." And I have gone to Alzheimer's learning groups, just to learn whatever I can and apply it as needed. But it's very hard to talk to people who think I'm hallucinating when I say my grandma doesn't remember older things any better than newer ones (in fact, if anything, she remembers newer things better, though it's basically a toss-up), or think I'm in denial when I say that she may think her reflection in the mirror is a person, but she still makes jokes and puns (trust me, when people who don't know her can tell the difference...). I get so frustrated, and I'm sure it can't be easy for the people who really belong in the group, either: here I'm complaining that she gets into everything (some days it's like having a large toddler around the house), while their loved ones haven't moved from their chairs in months. I'd also love to be able to chat with and toss around questions with people for whom the "normal" things about dementia--either Alzheimer's or other known dementias--aren't normal (for example, my grandmother's mother lived with a similar type of also-unknown dementia for about 20 years, dying in her early 90s, so the idea that my grandmother will necessarily die of her dementia in the near future because she's had it for so long--about 15 years now--is incorrect...I'd love to ask others how you plan for something so unusual that there aren't any guidelines to help you through it).

All of that said, I do want to thank you, and everyone else at Caring.com. It's so nice and helpful to have a place to ask my questions and pour out my frustrations, even if they are odd or complicated. :-)

Hedwig answered...

I have a relative with vascular dementia. Like your grandmother, my relative's memory seems to be similar for old as well as new things--which is to say, bad in both cases, but unpredictable. One problem with this is that false memories become constructed by bridging incomplete pieces together--the mind tries to make sense of, and build with, whatever it can still grasp. This makes the person an unreliable narrator, which can really be a problem if they are talking to folks who don't know their past and believe what they say. Also, like your grandmother, this relative remains active and continues to be able to joke and pun, despite lots of word retrieval problems. Dementias can be mysterious and complex.

Caringdenise answered...

Hi, Thanks everyone for sharing your suggestions! Caring.com now also has online support groups that you may find helpful, as well as the ability to create your own groups on this website: https://www.caring.com/support-groups This new feature was launched last week (April 5, 2012), and is in addition to the Stage Groups for Alzheimer's and dementia caregivers included in Steps & Stages.

A fellow caregiver answered...

I facilitate caregiver support groups through the Area Agency on Aging and provide information and discussion on a large variety of dementias in addition to A.D. I hope you can find someone in your area that does the same because they are invaluable. A gerontologist in your arera might be able to assist you in getting more information. If you can't find one I would be happy to make a recommendation.