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Develop a live support group for people living with dementia

I live in senior housing and have discovered that many folks here, like myself, are victims of early or moderate-stage dementia. Many don’t have relatives, so we are our only support. Does anyone have a manual on developing a live support group for people with dementia, or do you know of one?

There are groups in this area and throughout the U.S. for people who are supporting someone with dementia, but I have yet to find one for victims themselves.

Has anyone set up an in-person series of workshops, guest speakers, apps, and handouts to help guide folks facing this journey alone?

I was a grassroots organizer and might be able to assemble something, but why waste a lot of time for no reason? I live in rural Maine and do not know if I can attract expert speakers to Bangor. I realize that some professions require members to do public outreach to maintain their license or membership. Still, those types of professional people are exceedingly rare in this area of Maine.

If you know someone in mid-Main willing to speak on a pertinent subject without receiving an honorarium, please send me their information.

Might the A.A. be interested in collaborating with me to develop a program manual for people living with dementia to use in a live setting?

Comments

  • concerned_sister
    concerned_sister Member Posts: 425
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    Member

    If your facility had the equipment to project from a PC to a wall, would possibly a remote speaker work? For that matter, are there possibly videos in existence that you could share as a community?

  • concerned_sister
    concerned_sister Member Posts: 425
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    Member
    edited April 6

    I'm sitting here trying to brainstorm for you. I used to take my MIL to the local senior center for her "sight seekers" club that focused on folks with sight issues. Though the common bond is different, my sense is you're looking at a similar experience. I think you've already mentioned your local AA chapter, maybe your local Council on Aging or a similarly named group could help. Maybe there's someone you can contact at your local senior center who could point you in the right direction. I remember there was a speaker about getting your financial paperwork in order, there was a speaker regarding safety in the home. I guess a lot would depend on your group, attention span, etc. The agenda usually was going around the room having everyone introduce themselves and maybe share a recent story. Then potentially the guest speaker. Then often a game of some sort such as bingo. Then we had one wonderul woman in the group who always brought a cake so we could celebrate any recent birthdays. When you couldn't get speakers, maybe a church or high school choir. Anyways, good luck in your endeavor.

  • concerned_sister
    concerned_sister Member Posts: 425
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    Member

    I mentioned having a choir visit. There's always video. This is one of my favorites. You may know if it's appropriate for your group.

  • mkoscik
    mkoscik Member Posts: 11
    10 Comments
    Member

    Leeapole, I have vascular dementia and have had great results working with ALZ.ORG, They have online support and unlimited resources. I did a,search for you and found good information, see below:

    The Alzheimer's Association (ALZ) offers support groups
    for caregivers and people living with early memory loss
    throughout Maine. The ALZ website has the most up-to-date listing of support groups, which are time-limited. You can register for a support group by visiting alz.org/maine. You can also contact Amy Angelo at (207) 772-0115 for questions or to connect with support groups.
    Support groups can provide comfort, reassurance, practical advice, and humor. However, these groups are not appropriate for paid caregivers or professionals. You can call the ALZ's 24/7 Helpline at (800) 272-3900 to find a caregiver support group, or you can use the ALZ's events finder page. You should call or email the group meeting contact before attending to confirm that the group is still meeting at the listed time, date, and location.

    God bless you and I pray this will help.

  • Iris L.
    Iris L. Member Posts: 4,454
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    Member

    I have been planning on writing such a manual for members who are alone. I'll work on it after tax season. But it won't be about support groups.

    Iris

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more