A few weeks ago, I posted a conversation that I had with Kate’s brother, Ken. In that conversation, we focused on his diagnosis of Alzheimer’s at age 70, the same age at which Kate was diagnosed. Unlike Kate, he has chosen to be more public. For example, he told his children right away. Kate has told only one person, her best friend Ellen.
Another example of being more public is that Ken joined an Early Memory Loss support group rather quickly. That was in 2014, and he is still participating. Originally, Kate didn’t want to be in a support group. A few years later, she changed her mind. I told her I would look for one. I found that there are many groups for caregivers but not for people with dementia/Alzheimer’s. I even contacted the national office of the Alzheimer’s Association. They told me they had experimented with them, but they had never had much success.
Thus, when Ken mentioned his support group, I was eager to learn more. Last week we had a conversation about it. I’d like to share it with you.
RICHARD: Ken, you have previously told me about your early memory loss support group. I’m preparing a new blog post and wanted to learn a little more about it. How did you find out about it? Did you inquire with your local Alzheimer’s Association or some other organization?
KEN: Well, it turned out to be pretty easy. We learned about it from my neurologist. He encouraged us to call them to gather information and to arrange a visit to their different programs.
RICHARD: Is this group part of a state-supported program. Do you know of similar groups in other places?
KEN: No, it is a local non-profit agency program that depends on both professionals and volunteers who are responsible for different parts of our regular agenda. I’m not aware of other groups here, but I have heard there are some in Austin as well as other major cities.
RICHARD: Tell me a little more about your group and how it works.
KEN: The program has two groups. One is for those who are in the early stages of the disease. That’s the one I’m in. The other is for those in the more advanced stages. We meet in a local church every Friday from 9:30 to 2:30. That may seem like a long time, but we have a regular agenda that we follow. Each part is designed to address the various needs of people with dementia.
RICHARD: Who leads the group?
KEN: We have several people who are responsible for different parts of our agenda. Some are volunteers from the community. There is a paid director who is in charge of the program and usually a social worker in charge of the individual group meetings.
RICHARD: I’m curious to learn more about what you do over five hours.
KEN: I’d be glad to fill you in on that. The first two hours we deal with current events. We have a couple of volunteers, one of whom is a radio talk show host, who come in with a collection of news articles they think would be of interest. They cover a variety of topics that have been in the news over the past couple of weeks. They are not intended to be a summary of the current news, but things of personal interest that are intended to generate discussion. They are distributed in print form to everyone in the group. We take turns reading to the rest of the group. We often have a lot of discussion as well. Of course, that varies with the topic. When we are finished with one article, we go to the next one.
I’ve especially enjoyed this part of the program. The topics are interesting and the people in the group have a variety of opinions they are glad to share.
Then we have thirty minutes of exercise. It consists of a series of chair exercises that all of us are able to do. It involves a lot of stretching and bending. It just keeps us limber.
At noon, we have a working lunch that lasts for two hours. This is more like what you might expect in a support group. The leader generally opens the meeting by asking if there is anything in particular that anyone would like to talk about. Sometimes there is. Sometimes there isn’t. In either case, the leader always has a topic for us. We talk about a lot of things that are of general interest to people with dementia.
The last hour of the day we focus on the arts, especially music and art, but we also include special topics of general interest. This portion of the program is led by someone who has skills and knowledge on a particular topic. For example, we had an interesting program by a woman who was knowledgeable about the history of butlers in England. That is something we knew little about and made for an interesting presentation.
RICHARD: I want to thank you for taking time to help me learn a little about your group. I can easily see why you have enjoyed it. I only wish there were more programs like it.
KEN: It’s been a pleasure, Richard. I’ll look forward to talking with you again.