i am a nurse practitioner and i work for the local alzheimer's assoc. my job is to run support groups for people diagnosed with younger-onset dementia and their care partners. are there any other groups around? i feel like a pioneer in this field. i am only one of two groups in my state. any others out there for this population? Any social clubs for this population. not adult day but socia; clubs?
Welcome to my website. You just happened to come across someone (ME) who attends the best model support group for early stage and early-onset dementia.
Ours is unique because it is for caregivers AND their spouse with dementia. You can be a caregiver caring for a parent, sibling, or grandparent, but it just so happens that almost everyone in our group are spouses. We meet together for half an hour to discuss general stuff like conferences, family news, fundraising, etc. Then we split up - the caregivers go with one social worker, and those with the dementia go with another social worker and nurse. In our caregiving group, we openly and honestly discuss our feelings related to dealing with our loved one's dementia. In the other group, they discuss how they feel about whatever is bothering them (if they remember), but they also do a lot of brain stimulating games.
The absolute best part of our group is that we have become FRIENDS with many of the other couples. We socialize - go out to dinner, go to each other's houses, go to the movies, do all of the things "normal" couples do. In our group, it's most of the men who have the AD, and I just cannot describe how fantastic it is for them to have each other as friends. They are comfortable with one another; they don't have to hide their problems; they are supportive and understanding of each other. It is the same with the women. We can talk about things with each other that no other social aquaintance could understand.
One of the couples is having an extremely rough time - the husband, besides having AD, is dying from lung cancer. Although Hospice comes in to help, she is lonely and isolated. He misses his group "buddies" terribly. So one afternoon, we all brought pot luck - the guys got to spend time with him - he was thrilled - first time in weeks he ate a real meal, and his wife got to spend time with us, her friends.
If I get permission from everyone, I will post the pictures of our New Year's Eve party that we had at one of our houses. Back in July, I think I posted pictures of the big barbecue I had here for everyone.
Sometimes, if we can arrange it, we'll drop the guys off for an afternoon of fishing.
I live in Southern Florida - you didn't mention where you are. If you want to discuss this more, e-mail me - joan@thealzheimerspouse.com
carollousie, I am in NJ and believe it or not, there is only 1 support group for caregivers for EOAD patients. I was shocked, since NJ is such a populous state. I don't know where you are but you might want to contact COPSA at the University of Medicine and Dentistry in New Brunswick, NJ. They have a support group called "Young wives" support group. They may be able to give you some ideas and/or resources. telephone number is 732-235-4356. Good luck; these type of support groups are MUCH needed.
thanks for the info. i will call. an article about me was in the balto. sun 1/4/09! people dont know about yod. and we need to get the word out. people need early diagnosing and treatment. but i am preaching to the choir. i do hope there are other yod support groups out there.
I tried to get into one of the two EOAD support groups in the Minneapolis/St.Paul metro area - sorry, full up You could contact the AlzAssoc. Minneapolis office for more info.
To be honest, I'm not sure that any live group could top this great web community.
Carollouise----I suggest you contact Teri Miller at the Houston Alzheimer's Association. Her email is Teri.Miller@alz.org She facilitates the support group I'm in, which is all spouses of persons diagnosed under age 65, and i believe she contacted other Alz.Assoc. groups before she started our group in the summer of 2007. She also facilitates the early stage support group that the Houston association has sponsored for several years , which is for both the diagnosed and the caregiver; it sounds a lot like the one Joan is in. I don't have her phone number handy, but I'm sure you can locate the Houston chapter via the national website and get her phone number, but she's very available via email. Good luck!
Carollouise, You are a pioneer in your field. I really appreciate that you are working in this area. There is a huge support void for the younger on-set group. The younger people with AD really need opportunities to socialize. There are no early onset support group in our area. The nearest group that the Alz Assc has is 45 miles away, during my work day and it is not targeted at younger people. Local support groups through the senior center, NH or hospital are for older people and they are all during the day. EOAD support for us is primarily on-line. Through word of mouth and my DH getting story time in local newpaper, we have met two couples in our town with younger on-set. We are meeting with one of the couples for the first time tonight. We know there are more like us out there who have a need for support. I did get info from the Alz Assoc. about starting a support group myself but haven't had the time to even think about the training. I would appreciate you posting info/ideas that may help others start a groups.
young on set support groups and social groups for yod that are not like adult day is an unmet need. this is time to get these folks the social, emotional, and educational support. iyod is SO different from the later on-set. needs are different. interventions are different. family support different. my group is a dual action group with one part for the pwd and the other for the care partner. to know you are not alone is essential. we are talking about conference calling so that distance care givers can participate. oh Lizbeth--my group is at night (6:30) so that working care partners can come.
Here on Long Island, NY,The Alzheimer's Association provides no groups specifically for those with EOAD or early stage AD. Same with suport groups for spouses. All they provide are activity/day care types of programs ... not support groups. Fortunately, there is another organization, the Long Island Alzheimer's Association, that DOES provide support groups. LIAF has one group for those in early to moderate stages, and a support group for spouses meets at the same time. These are weekly afternoon support group meetings that each last for one hour.
There are no support groups in my area at all. The only one I found was in downtown Chicago and that is too difficult for me to get to. The daycare my husband goes to is just starting a caregiver support group and the first meeting is Wednesday. I've signed up for it and will see if it will be helpful for me. Right now all my support is here. :)