Finding support group for the person with dementia

MT678 · October 2023

There seem to be numerous in-person support groups for caregivers, but I have not found an in-person support group for the people who have dementia. My mother recently received a dementia diagnosis. I think she might benefit from discussing her feelings with others who are going through this.
If you or the person you care for participates in such a group, how did you find it if there was not one connected with this association?

I have a friend whose husband participates in an online group, but that is not something my mother would do.

harshedbuzz · October 2023

Hi and welcome.

I am sorry for your reason to be here, but glad you found this place.

There aren't as many IRL support groups for those people diagnosed with dementia. Her neurologist's office or the community outreach department of your local hospital may know of something in your area. What we saw most often in our community was something called a Memory Cafe which was a meet-up for PWD and their caregivers. The one my parents attended was structured so the group was split into an activity for the PWD and a chat for caregivers in another part of the space after coffee and cookies. Neither parent liked it. This was not long after dad's diagnosis and I think the folks there who were progressed further and representing his future upset him.

HB

Marta · October 2023

The majority of people with dementia cannot recognize that they have dementia, because their brain is broken (this is called anosognosia). As such, they cannot really process what’s happening to them. For the same reason, PWD do not benefit from psychological counseling, for the most part.

What has your Mom’s reaction to the diagnosis been so far?

Iris L. · October 2023

Both HB and Marta gave the totality of the answers. PWDs in Memory Cafe do not talk about their feelings about having dementia. You might ask your local chapter about an Early Stage Support Group, if your mom is in early stage. We have online support here, but you already said your mom is not interested.

Iris

SusanB-dil · October 2023

Hi MT678 - Perhaps maybe an adult daycare might work? Even if only 1 day a week?

MT678 · November 2023

https://alzconnected.org/discussion/comment/187177#Comment_187177

She was angry at the doctor and said she'd never go back to him. Actually, that part was good, because she has said for years that she didn't like her doctor, but she has always refused to change.

She told my stepdad that she wanted to tell us herself (of course we already knew), and she did tell my sister, maybe that day or the next. ("Apparently, I'm crazy," is what she said.) But she has not discussed it with me at all, and by now she probably doesn't know whether or not she did, or even that she was going to.

MT678 · November 2023

https://alzconnected.org/discussion/comment/187185#Comment_187185

Not at this point.

harshedbuzz · November 2023

@MT678

Dementia is brings a whole host of changes early in the disease process apart from memory loss. When you say you think mom would benefit from support, is because you've seen an uptick in irritability, anxiety, mood changes? If this is something you're seeing, maybe it would be worthwhile to have her see a geriatric psychiatrist.

Dad was already a challenging individual pre-onset but once the poor executive function, moodiness, apathy and lack of empathy started his chronic irritability and agitation required medication. We presented the appointment with a "new doctor" (never mentioned psychiatry--"apparently I'm crazy" is something dad would say) as a kind of second opinion because we didn't like what the previous guy said. The geripsych was great. Early on dad took an SSRI (Prozac) to help with anxiety and depression, later we added a low dose antipsychotic to manage his aggressive behavior and hallucinations.

FWIW- The majority of caregivers here seem to prefer their LO isn't told their diagnosis and use work-arounds behind the PWD back to keep them safe.

HB

Finding support group for the person with dementia

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