I have discovered these past 6-8 months that support groups for those with EOAD as well as support groups for EOAD spouses are few and far between across the country. I've been given several reasons to explain this: First, not enough funding. Second, not enough of a population to draw from. And third, that those with EOAD usually do not want to share what's happening with others because it's too depressing, even with others who also have EOAD. I have found the same is often true for those in the early stages of AD, regardless of age, and their spouses ... few available support groups meeting regularly in many regions of the country. There seem to be lots of day care type programs and activity porgrams provided ... but not many support groups.
I'd like to hear from others about their experiences. Do you have such groups where you live? If so, are they led by a trained social worker or counselor? Do they meet weekly, bi-weekly, or monthly? Do they meet during the daytime or in the evening? Are they specifically for EOAD or available for early stage AD regardless of age? Thanks!
I want to answer you in depth, and cannot do so at the moment. Company is coming in a few minutes. Please check this thread either later tonight or tomorrow, and I will have information for you.
acvann----We live in central Houston (tx) and our local Alz Assoc sponsors both kinds. They have had sponsored a group for early stage and their caregivers for several years. Then, in summer of 2007, one of the staff members decided that she had five couples where the diagnosed spouse was under 65, actually all under 60 at the time, and got us together for a focus group. We all bonded so well we started meeting monthly----I think at first she might have been doing it without the full support of her boss, but now if they stopped the formal meetings, we'd probably get together anyway! FYI, about of the couples who attend at some time also attended the early stage group, but it is a totally different thing. We meet at night, since most of the spouses still work, and quite a few have young children. The staff member facilitates the group, and usually has a small agenda, but most of the time we just talk. This month we had a speaker who helps families with placement issues; we have also had medicaid/estate planners speak. Of the core 5 of us who started it, one has moved her DH into a nursing home, I have full time paid care at home for my spouse when I'm at my office, and the other three use a combination of family and spouse supervision most of the time. We probably have a new member about every other month, and average 10-12 attendees each month. We communicate via email a lot in between---and some of us have theatre/sporting event tickets that we share among ourselves and/or attend together. Your comment about not wanting to share in the early stages was interesting----in some cases, the diagnosed person doesn't want other people to know, but we have found the spouses greatly benefit from the sharing. In fact, if we had a stated mission purpose other than helping each other, it would be to educate young people and remove the stigma. Hope this answers some of your questions, and I may be back later to add some more. I'm actually off to attend a party given by a friend from my other support group from my neighborhood, which by the way is totally an informal group put together by a neighbor and people come via word of mouth----my friend was caring for her father, who recently passed away, and her party is sort of a "thank you" to friends for all the support. Anyway, as you can tell----I highly recommend face-to-face support groups if they are available, but I also gain alot from Joan's website!
Texasmom's group sounds like the one I attend. Many of us have bonded and become friends. They are our social circle now.
Anyway, as I understand it, you are looking for an Early ONSET group, where the people are younger, or if you can't find that, you'll take an Early STAGE group, where the people are just beginning their journey.
Our Early STAGE group was designed to be closed ended, which means that it was an 8 week introductory course to Alzheimer's Disease - each week a different topic was covered - mental and behavioral changes, finances, etc. At the end of the 8 weeks, the group was finished, and the next group of Early STAGE people came in. There are still some groups around like that, but everyone wanted to stay, so a lot of those EARLY stage people advanced, but are still with our group. We meet for 1/2 an hour together to talk about announcements, upcoming events, news. Then we split. The caregivers go with one social worker for a support meeting, where we bare our souls to one another. Those with the memory disorders go with another social worker for support and fun activities. As I said, many of us have formed friendships and get together for movies, dinners, theater. The AD guys (it just happened that the ones with AD are guys) get together once a week to play simple card games/dominoes at someone's house. Once a month, through the efforts of one of our wives, they have a supervised van trip to fun places (museums, fishing, whatever) and then out to lunch. They love it.
I know of no EOAD groups around here, but they are badly needed, and I would think one that is run like our Early Stage group would be ideal. There is only one way I know of to get one, and that is to lobby for one through your local Alzheimer's Association. And if that doesn't work, do what Alice did in the book "Still Alice". Start one of your own, and lobby the Alzheimer's Assoc. to let you borrow a social worker. If it works out, they may feel it is worthwhile to become involved.
If you are interested in talking to my social worker about how to get a group started, let me know, and I will give you her phone #.
Zilch for any support groups in my area; 45 min away are 1 or 2 meeting at night. No way am I driving there for an hr or so meeting and returning at night. THIS is my support group. Thanks, folks.
I am in Lake Charles, La and can't find any group for EOAD. I have spoken to a person at a senior living home and she said that some caregivers for alzheimer patients attend. Since then that group has stopped meeting. She was a kind lady, listened to my concerns about setting up a group for eoad and their caregivers but that was all. She didn't ask for my info or phone number and seemed like she did her job but was mainly concerned with the alzheimer's end of the issue not the eoad end. I am getting that a lot.
It is real silly that more attention is not given to EOAD. That is just as serious and devastating as Alzheimer's Disease. I come to this site to get the information and support that I need. Without this site I don't know what I would do. I have called the Alz. hotline and the people do listen. But that seems to be the end of it. This is the best and most rewarding place I have been and will continue to come here for peace of mind and advise.
Luckily for us, the MD Alz Assn chapter has made young onset dementia a priority. There are several EOAD and early-stage memory loss groups and a wonderful early stage coordinator with whom I do a monthly support group. I would say, keep pestering your local chapter to put something together.
This is taken directly from the Camp Building Bridges Website as a resource for EOAD:
Younger Onset Connections
Younger-Onset Connections is a directory list that was put together by JoAnn Webster, the Younger-Onset Coordinator for the Oklahoma/Arkansas Chapter. The directory is a list of names & numbers as well as e-mail addresses so that families with younger- onset can connect for support.
To be a part of the Younger- Onset Connections, receive a directory and a Newsletter, feel free to contact JoAnn at:
918-481-7746
or e-mail JoAnn at: Joann.Webster@alz.org
JoAnn is only in the department part-time though she has committed herself to Younger-Onset full-time, please be patient and she will get back with you asap.
Joan: Thanks for the info about JoAnn Webster's list, etc. I think I participated in an EOAD survey she did 3-4 years ago, and she was very nice, but I didn't know about this ongoing project.
Also, I wanted to clarify that our early-onset support group is only for the caregivers, although many of our ad hoc social gatherings include spouses! Also, our original group was 4 wives and one husband, but now we have two husbands. I think at first they both were a little hesitant, but my impression is that our group is one of the few places they can vent and get practical advice, whereas most of the wives have other outlets. As I mentioned earlier, we meet once a month in the evening at the local Alz. Assoc office and order pizza, but we communicate in between meetings via email quite frequently.
One thing we do for the local Alz. Assoc. is that when they get phone calls from newly-diagnosed EOAD persons and/or spouses, we are all available to talk with their spouses via telephone or email. We have also helped each other with our social security disability filings (much like the persons on this website do) and things like that affecting persons under age 65. Whenever there are big conferences or seminars in our area re Alzheimers, some of us always try to go together, not just for moral support, but also because sometimes the comments made about early-onset are just wrong, and if we have several of us there, we feel safer correcting the speakers. At one conference a neurologist (not specializing in AD, but speaking about end-of-life decisions) in response to a question said everyone diagnosed with EOAD died in 2-3 years because it is always familial! Since NO ONE in our group has a spouse with the familial form of the disease, we immediately corrected her.
I agree with the comment above, keep pestering your local assoc. to at least offer their facility as a location to meet---I assure you there will be plenty to talk about once the group gets going.
In fact, I have been pestering our local Alz Assoc. chapter to start an EOAD group. They currently run 34 groups for caregivers on Long Island, where they estimate a population of 55,000 with AD, but zero groups for people with EOAD. Just this week, however, I was contacted by the Alz. assoc ... they are planning to start a group for people with EOAD in the next month or two. Of course, they also told me 4 months ago that they already HAD such a group,but when my wife and I came down that evening, but there was NO group! They DID have a group for spouses ... but not for people with EOAD, despite specificalyl asking and being told they did!! And yes, Joan ... we have ben considering starting our own group just as fictitious Alice did!
Joan ...as for the Younger Onset Connections group, I learned about them and contacted them about 8 months ago. Unfortunately the results were not all that positive. The list of names I received was terribly out of date ... of some 25 names, 20% had died several years earlier and didn't wish to be contacted, 20% no longer had valid email addresses, about 40% just didn't respond. Quite a few who did respond may have HAD EOAD ... but they are now in their mid to late 70s. Sadly, I was unable to make even one 'solid connection' through that source. Oh ... and Joann is no longer in charge of the list or the newsletter. Quite frankly, I've forgotten the name of the person who succeeded her because I was just not impressed with the organization.
I'm really sorry to hear that about the Younger Onset Connections Group - I am adding to my looooong list a note to talk to someone I know at the head of the Alz. Assoc. about this EOAD problem.
I live in Denver and the Alz Assoc has a monthly EOAD group. I've only been a couple of times - but it is a good group. They split the patients/caregivers into two groups. I enjoyed our group; but my husband wasn't thrilled with his as most of the other AD patients were worse off than him at the time. I subscribe to the Younger Onset Connections newsletter - they do a mailed newsletter monthly I think. Here is an online PDF of one I found from June. The contact info is in there. There is usually some pretty good info in there. http://www.alz.org/alzokar/documents/ALZ_Younger_Onset.pdf
I work 3 days from home and 2 days I commute an hour each way to work - but my husband seems ok to stay by himself those 2 days. Not sure what I will do when he is not!!
I don't know of anything for early onset in my area (upstate south carolina) but we have an early stages group where patients and caregivers meet separately. We went for a while but my husband doesn't think it is worth his time (some denial in that--he feels that the things that affect him are the Parkinsonism, not dementia). I wasn't that happy with the group because the social worker tends to avoid talking about strong negative feelings. I went in there one day upset and she changed the subject as quickly as she could.
EOAD folks have very different issues - they are in the prime of life. I tried the local AD groups and folks couldn't relate to me and my problems. Grateful to have found this board.
acvann, I tried to start a group here in Jacksonville Florida for EOAD. My Lodge provided the space no charge and even offered to help with some money to get it started. I advertized and never got one call. It's odd because I know there has to be some out there. I can't explain it.
hi Tara. glad you did join the group. as you read you will find so much valuable info and most of us who have gone thru or are dealing with the same issues at hand. many new comers lately, and many older 'veterans' and lots in between mid stages. looking forward to more of your input and postings. divvi
Anchor 20, we were fortunate in discovering the Long Island Alzheimer's Foundation, which is loosely affilated with the AFA, Alzheimer's Foundation of America. Whereas they did not have a group specifically for EOAD (by the way, more and more now I'm hearing the change of usage from early onset to young onset), they did have a group for those with early to moderate stage AD, along with a group meeting at the same time for spouses of those with early to moderate AD. My wife and I were participants for 3+ years. We dropped out so I could place her in a day care program at LIAF to give myself some respite time on a different day of the week, and for part of the time when she is at her program I continue to meet with quite a few present and former spousal group members for lunch.