Why you might want to consider organizing and facilitating a support group in your area | Lewy Body Dementia Association LBDA

Why you might want to consider organizing and facilitating a support group in your area

By Victoria Ruff

As a caregiver, if you know two to three caregivers in your area, why not begin a local support group yourself as facilitator? That's what I did in Boston, MA. The key word is "facilitator," not "leader." You're just organizing the meetings and once everyone meets, you open the floor for participants to speak.

When I started thinking about starting the Massachusetts group, there were just two other caregivers I knew of in the state (from the online support group board). I contacted LBDA and let them know that I'd be interested in becoming a facilitator. I took the LBDA training which was a teleconference, plus signing off on reading some LBD materials that are basically most of those documents that we each have already read).

Give it time

Then, LBDA posted the group on its Web site, included my contact info and I started to get emails from people interested. It took a little time -- I did the teleconference in January 2007, we had our first successful meeting in May 2007 (had one in April too but the weather was lousy so that one didn't work out). By April of 2009, I had a local e-mail group of more than 70. Our meetings have about six to seven members on average in attendance, but I e-mail everyone meeting notes the day after. My feeling is that those members who are unable to get away due to 24/7 caregiving have the same questions as the members who are in attendance. So they still benefit from reaching out.

The nursing home where my mother lived volunteered to be our meeting location, which opened the doors to other possible members. Sherrill House has been very accommodating. Staff members post flyers about the meetings, advertise the meetings on their Web site, and key members of the team will be future guests.

Matchmaker, matchmaker

It's all relatively easy -- doesn't take much time. And even if a meeting doesn't happen (which after that first failed attempt had me thinking this), I feel that opening up to start a local support group was a success in itself. It allowed other local caregivers to find me so that we could have a local e-mail group at the very least. It's a way to connect to others in your own area.

I'm also able to "connect" actual neighbors together. There are several pairs of members in the group who personally keep in contact with each other. For example, I connected two long-distance caregivers because they're both dealing with additional emotions; two individuals in the group meet for coffee regularly in their neighborhood; two other individuals met for lunch since they live in the same neighborhood and while one had questions re: long-term care insurance, the other has already had experience in that regard; one individual who can't make the meetings due to distance now has the phone number of another member in her own neighborhood so the two of them can become a buddy system for each other, etc. (Of course all of these individuals gave permission prior to the "match-up.")

Just offering to start a local support group in your area will turn you into the "go to" person in your area. And don't think you need to be an expert in LBD, because you don't. Just the fact that you're a caregiver of someone with LBD is enough experience. If interested, contact the LBDA Support Group Coordinator. I have to say if you asked me three years ago if I would be a group facilitator for a support group meeting I'd say, "No way!" I'm the introvert type and this is certainly something I was never comfortable about doing -- but it's that simple, and not a big deal as I thought it was. And it's very gratifying to be able to help others in my area!