Virtual Support Groups on the Net!

Bob DeMarco posted an interesting article on Alzheimer’s Reading Room (ARR) on 1-29-12 entitled:  Alzheimer's Support Groups and Google Hangout which you can find by clicking on the title to find it on ARR or clicking on Archive to go there to read it.

What he describes is a new feature of Google+ that provides an interactive service for visual chat over the Net. It is simple enough, involves installation of no software; it is just a matter of joining  then organizing your own group for discussion.

This can be attractive for Dementia affected folks, namely, those afflicted who spend most of their time at home with little or nothing to do, or, their Caretakers who have so much to do that loneliness intrudes for lack of the time to maintain social contact. Both groups have so many common problems needing discussion that it would be a wonderful avenue for having a virtual support group where a real one is impossible. For the Caretaker it would be more than helpful.

For those like me with Dementia it would be an invaluable tool for obtaining the socialization, intellectual and creative stimulation that is so vitally important but often not available to us because of the limitations imposed by our disease.

DeMarco in his article asks these questions:

1.     Would you be interested in participating in an Alzheimer's support group online using Google Hangout?

2.     Would you be interested in moderating a Google Hangout for Alzheimer's Caregivers?

3.     Do you think this is a good idea?

4.     Should I consider starting a program that would help readers of the Alzheimer's Reading Room to start Hangouts?

5.     Do you think nursing homes and memory care units should be offering Google Hangouts so that in-patients can talk to one or more of their family members on a scheduled basis?

My answer is a resounding yes to all of the questions. I have already gone on and registered a site for a hangout. My difficulty is deciding who I want to invite to be members.

People with dementia I have found have a very hard time opening up without a moderator to guide and encourage conversation. I have been involved with support groups since joining AA 37 years ago. At these meetings it is difficult to get folks to shot up and pass the conversation on.

When I tried support groups with AD (Alzheimer’s Disease) I was floored by the reticence of so many. It could be attributed to the level of deterioration of each person but I do not think it is. Too many of my peers in the early stage just do not have whatever it is that eases discussing their disease.

So as I look for folks to join. I will be looking for folks with an interest in sharing their experience of the disease and talking about it. I have dealt with a number of bulletin boards concerned with people who have dementia and these have been good for sharing. But the depth reached with a group can be difficult. Too often they howl if your responses are more than a mini paragraph. It seems all of the bulletin boards I have participated in have this impatience.

I could accept the concern producing the objection is because of what I have to say or that I am just objectionable in the way I say it, but I see others getting the same treatment if they go to any length in trying to say something. The reason for howling too often occurs because the others say they cannot give it their attention over the time it takes to read it. To remedy this I have cut my contributions to segments and posted them serially and separately. This acceptance when I do this is better than suggesting they simply not read it if it is too long.

I would expect with a group virtually coming together for a set time on a set day or days of the week perhaps greater sharing and depth might become possible. A good support group offers this.

Whether such a group should be limited to those afflicted, at the same level, anyone affected or just caretakers is another question seeking resolution.

I do intend to dive into this with the hope we can fashion something that works. I hope Bob takes the lead in teaching us how.

This all being said I ask these additional questions: What framework should such a virtual support group have? What kind or level should the people of the group be comprised? Should it be stage of the disease, or, mix of caretakers and afflicted, or some other criteria?