Wednesday, August 5, 2009

August 5th, 2009 The "Support" Group

In theory, the Alz support group should be an outstanding and promising element of the treatment and management of people like us. Unfortunately, it just doesn’t work. Here’s why.

The greatest barrier to developing highly effective support groups isn’t the desire, the efficacy, or the creativity of those involved. It has all to do with numbers, with INCIDENCE. Fortunately for most, Alz is not a truly common condition. But because of that relatively low incidence, it is difficult to accrue a critical mass of people in any given location. In order to have effective support groups, you have to achieve a critical mass of those who have the disease. One might think that a phone-based call in scenario, but the cognitive limitations of the group would seem to preclude this.

I have been in face-to-face-support groups with a moderator/facilitator that worked well, but again, because of incidence levels, it is hard to get a critical mass of alz folk together on a very regular basis. The “catchment” area for alz participants has to be pretty broad geographically—I live in the suburbs of Baltimore County, and we have a fairly strong alz group that the association hosts, but we can’t get more than five+ active alz-diagnosed folk on a monthly basis.

If only the incidence level was that of Alcoholics Anonymous! As it stands, we are lucky to be able to meet every month. AA has done some very innovative  work using phone meetings, but again, the challenges with cognitive difficulties make it pretty unlikely that meaningful support could take hold.

Perhaps the hospitals in the region could provide some help with logistics and facilitation…but no I am getting in over my head.

I’ve got to go now—if anyone has thoughts or ideas, contact me at:

Chuck Donofrio

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