After 15 or so years of speaking with people living with early-stage dementia and working with To Whom I May Concern® Sharing Groups, we understand the benefits of support groups for people living with dementia, and believe strongly in peer support groups for people with early-stage dementia. That’s why we’ve developed Creating Connection, a course specifically to teach people to start and facilitate support groups.
As I work to create and promote the course, I delved into the research about the benefits of support groups for people living with dementia. Was what we were hearing reflected in the research? So far, I’ve read three papers: one was the result of a survey of support group participants, another was a research review, and the last was about narrative agency. While this hardly constitutes a thorough review of existing research (and the paper on narrative agency is only loosely connected to support groups), what I read was enough to support our own learning over the years. As such, I’d like to focus on three benefits of support groups for people living with dementia.
A Source of Information
A key benefit of support groups for people living with dementia is that the other people in the group–all living with early-stage dementia–share their coping strategies: their “tips and tricks” for getting through the day and continuing to live a full life. In the paper, Effectiveness of Support Groups for People With Mild to Moderate Alzheimer’s Disease: An Evaluative Survey (Lisa Snyder, MSW, Cecily Jenkins, PhD, and Liesbeth Joosten, MS), the authors present the results of a survey on discussion topics. Strategies for coping with Alzheimer’s disease rated as the most interesting topic, with research and drug updates coming in second. In an interesting juxtaposition, the discussion topic of “Planning for the Future” outranked “Reminiscing about the Past.” Participants rated understanding of Alzheimer’s disease, better coping strategies and ability to accept their diagnosis as the top three results of participation.
Friendship
The same survey asked about the reasons for attending a support group. “Friendship and socialization” was the top reason, outranking their desire to learn more about Alzheimer’s disease and coping strategies. We are not surprised. The topic of loneliness comes up in every To Whom I May Concern® Sharing Group, so much so that we’ve dedicated a couple of sections of the script template to the topic under the headings of “choosing to tell others about your diagnosis (and dealing with the fallout)” and “what we’d like from others.”
The hard truth is that disclosing a diagnosis of dementia is an act of bravery as they risk losing their “friends.” The reasons for friends becoming distant include stigma, discomfort in knowing what to say, and misunderstandings about the disease and its impact. The fact is that people living with dementia just want to talk about regular things: the weather, sports, fashion, current events, gossip. So when their existing friend group fades away, people living with dementia must find a new group. If they are fortunate to live where a support group exists, they will find new friends who understand what they are going through and quickly find common ground.
Unfortunately, support groups are few and far between.
Telling Your Story
“Narrative Agency”–the ability and opportunity to tell one’s story–is important to everyone. We need to be able to tell our story as a means of building and retaining our identity, earning respect, gaining understanding, and finding meaning and purpose. However, narrative agency is negatively impacted by dementia. Dementia can make it more difficult for people to form words and sentences; they often need more time and most people don’t have time to give. As a result, they shut down. Practice makes perfect, and if this opportunity to speak (at To Whom I May Concern, we say “Just give me a minute!”) is taken away (inadvertently, mind you) by care partners, friends and community members, it becomes harder and harder for a person with dementia to “rally the troops,” collect their thoughts, turn them into sentences, and then have whole conversations. We have seen people whose opportunity for narrative agency has been diminished, blossom in a Sharing Group.
A support group can provide a safe environment where accommodations are provided to help with “ability” and the opportunity to speak is cherished. “A systematic narrative review of support groups for people with dementia” (G.R. Toms, L. Clare, J. Nixon, C. Quinn) discusses the benefits of a facilitated support group for people living with dementia:
“[Support] groups for people with dementia may benefit from professional facilitation to help with word finding and initiating discussions without some scaffolding. A more structured group format may help people with dementia manage memory and language difficulties in meetings.”
In other words, a facilitator can help with both the ability and opportunity for narrative agency, which in turn improves confidence and self-esteem and provides meaning and purpose.
Final Thoughts
The dearth of research about support groups for people living with dementia points to two issues: the small number of support groups and the importance attached to them. I hope by highlighting the benefits, we can bring support groups for people with early-stage dementia into the limelight so that demand for them grows.
And, we hope that by offering Creating Connection to help people start and facilitate support groups, we can increase the number of groups and make them more accessible to people living with dementia.
- Laura Bowley is the Director of Communications & Development at To Whom I May Concern®
- To register for the Creating Connection course, see https://towhomimayconcern.org/dementia-support-group-facilitator-training/
