After a year of advocating, it seems that our local Alz. Assn. is finally going to start a support group for those with EOAD/early stage AD, led by a neuropsychologist. As of now, on all of Long Island, which has a population of just under 3 million people, the Alz. Assn has no such group. They provide lots of day-care type activities and lots of other kinds of support groups ... but none for those with EOAD/early stage AD. Sadly, they are planning for the new support group to meet just once a month. Also sadly, there will be no group for spouses meeting at the same time in another room. My wife and I currently attend groups for those with early-to-moderate AD sponsored by the LI Alz Foundation... she meets in one room with about a dozen people with Ad, and I meet in another room with about a dozen spouses. These group meet weekly, not monthly ... and both are led by social workers. I can't imagine holding everything in for a month. (Thank goodness for THIS site!) Anyway, my question is, for those of you who do attend support groups around the country, I'd be curious to know the answers to these 4 questions: 1. How often do your groups meet? 2. Are there separate groups meeting at the same time, one for those with AD and one for spouses? 3. Are the groups sponsored by your local branch of the Alz. Assn. or by some other group? 4. Are your groups led by a social worker? As I've already noted on other threads on this site, and as others have noted as well, the Alz. Assn. has often dropped the ball where we live.
acvann, here is my answer to your questions: 1. Our group meets once a month, but lately we have added a "pot-luck" lunch in between. I am the only man in the group, which is why they decided to make a quilt showing something about our ADLO. 2. There is no separate meeting for those with AD, but since the group meets in the Caregivers' Resouce center in the Adult Day care facility, the AD patients can stay there. The group is for all types of dementia. 3. The group is sponsored by the day care center 4. The group is led by a social worker.
There are two groups meeting at different places that say they are for EOAD. They both meet once a month, one the first Thursday, the other the 2nd Monday. One has a group for those with AD - in fact there is a meeting of those who can still talk/do things, and one for those who can't. I have only attended the one with groups for the AD person and that was only once, my hb did not go. It was led by someone who runs a Memory Care unit I think.
Our Alz Assn chapter has several support groups for EOAD/early stage. They have existed for several years; they meet once a month; conducted by geriatric nurse/social worker; the first part of the meetings everyone attends (about 1/2 hr.), then they break into two groups--spouses in one, patients in the other.
There are no support groups in my area - not that I would/could go, if there were. There is a "caregivers" luncheon meeting once a month and I do go to that. Not much to it, but I go just to get out for an hour and a half, have lunch and perhaps a little conversation. The last meeting was led by an author who had cared for her husband for many years before he died (not dementia, although it was a little toward the end). She has written 3 books. Sorry to say, it was very boring.
This site is my "support" group. Nothing like listening to those who have lived it to the end, and those that are in different phases of this terrible thing that affects all of us.
Thank you, Joan, and all of you who are here to help.
Our group met once per month with the caregivers in one room and the spouse in another for one hour. The group was led by an employee of the Alz Asso and I don't know what her special training was. It was a good group with anywhere from 8 to 14 attendees and they went around the table asking everyone what was happening with them since the last meeting.
I found a group in my new city last week and there was only one lady and myself there re alz/dementia. There were five facilitaters (some of them were in training). Kinda out of kilter, but, that was OK since I have been without support for a couple of months.
My husband's day care just started a suppport group that meets once a month. The RN runs it. She had training by The Alzheimers Association. We have only had 3 meetings so far. We did have a representative from the Alzheimers Association come and answer questions regarding behavior and how to handle them. My husband has FTD so some of the information does not always relate well to my situation but it's good to have others to talk to. There are only two of us who are spouses and the other spouse's wife also has FTD. We sometimes compare notes with each other.
Our loved ones are there but on the other side of the facility where they can watch tv and are given snacks while we meet.
Ours meets once a month; the LOs are taken to another room and have snacks and talk. It's run by a woman who's an administrator in an "institute" which administers tests in different trial programs and is run by a doctor. I don't know if she's a social worker. She's smart and I think she's learned a lot but she's not really very helpful to people so she's asked a gentleman whose wife has died of AZ and who has been active in AA to come to the meetings. He's very helpful.
It's interesting to note that of the responses to date, most groups are meeting only once a month ... and led by different kinds of facilitators. I am so happy that my current LIAF group meets weekly. I don't know if my wife will even want to go to the new Alz. Assn. group becuase it will only meet monthly ... if it actually gets off the ground. (Three different times in the last year we've been contacted by the Alz. Assn. about the 'new group' they were starting ... yet each time it failed to get off the ground!) Wouldn't it be nice, though, if the Alz. Assn. also provided a support group for spouse/caregivers to meet at the same time since some of us will be driving an hour each way to/from these monthly meetings! In my current weekly support group, we spouses have bonded so closely that we have become a very supportive 'family' for each other, often exchanging emails and phone calls between meetings. Just as Vickie noted above, this blessed site also provides that same kind of opportunity as we can read/post comments with people experiencing the same things we are going through. Thanks again, Joan!
The group we go to is very similar to the one briegull described. Sometimes we meet in two groups with leaders for each. I think they are both social workers, but I'm not sure. Occasionally, if there is a speaker, we meet together. It started as a group for those dealing with early stage dementia. However, the original group didn't end, so many of the people who attend are well past the early stage. The group is good, but I have learned much more here than there.
We just started a small support group here at our retirement facility. We meet every Mon. morning and there are four of us. It's going really well and everyone seems to feel comfortable about sharing, even sensitive issues.