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An Interesting Support Group for People with Dementia

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.

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Kate’s Brother Ken and His Diagnosis

In previous posts, I have commented on the fact that Kate’s brother Ken is also living with Alzheimer’s. Like their individual personalities, their approaches following diagnosis have been different. Ken has been more public and more active in learning about the disease as well as taking steps to maintain his abilities as long as possible. Kate has accepted the diagnosis and chosen to be private and to live as though she doesn’t have the disease.

Ken and I stay in touch by phone and email. Here are several excerpts from our recent communications.

RICHARD: Ken, a few weeks ago, I wrote a post in which I compared the different ways which you and Kate have approached your Alzheimer’s diagnoses. As you and I have discussed, I thought it might be informative to the readers of this blog if we learned a little bit more about your own experience. Today, I’d like to know how you came to seek a diagnosis in the first place. Could you tell us a little about that?

KEN: I’d be happy to, Richard. My wife, Virginia, encouraged me to see the neurologist. I was having trouble with transposing numbers, remembering dates and appointment times. I had previously given up tax preparation and other accounting responsibilities, primarily because Virginia did them much better than I did.  I spent my time on the construction of family photo albums, which allowed me to work at my own pace without deadlines.  I was aware of the greater time it took to complete albums, and the fact that I relied heavily on Virginia to make the final corrections.  I have never really been a “detail person”, so it was easy for me to assume my issues were just a normal part of the “aging process”.  

RICHARD: Were you surprised when you got the diagnosis?

KEN: Not really.  In some ways, I felt relieved in the sense that it explained my decreasing abilities.  Being aware of the deterioration part of the disease forced me to appreciate the present, reflect, and prepare for the future.  Fortunately, I am an introvert, so this comes somewhat naturally to me.  Four years later, I continue to monitor my progression with the disease.  Even with the steady decline in short-term memory and ever-slowing processing speed of information, Virginia and I have made the necessary accommodations so that we both can lead happy lives.  

RICHARD: Did you have any dramatic experiences that made you think you might have a problem, or was it just a lot of little things? For example, did you ever get lost while driving in what should have been familiar territory?

KEN: No, nothing comes to mind. Thankfully, I am still driving. So far, I haven’t gotten lost. I will say, however, that Virginia does all of the driving when we are together. Most of the time when I am driving I go to places that are near to home. That makes it less likely for me to have a problem.

RICHARD: That’s good, Ken. I recall any number of occasions in which Kate called me from the car asking for her help getting places she had originally had no trouble finding. One of the most dramatic was when Kevin and his family flew into Knoxville. We needed two cars to accommodate all of us and their luggage. I went ahead to the airport. Kate wasn’t quite ready and was to meet us there. In a little while, I got a call from her. She was in downtown Knoxville, not much closer to the airport than she would have been from our house. I told her to stay there. Kevin’s whole family crammed into my car, and we drove to where she was.

That was before I had told the children about Kate’s diagnosis. I knew that must have been a clear sign to Kevin that she had dementia. After I told the children, Kevin told me that he thought it strange that she would have gotten so lost, but he didn’t really think she might have dementia.

RICHARD: I was interested in hearing you say that you monitor your progress. Could you tell me a little more about that? Do you keep any periodic records on how you are doing?

KEN: For the most part, my judgment of my progress is just impressionistic. The only thing for which I have kept records is with Lumosity. For example, after my first year, I had to back down on the playing levels of some of the games, primarily games requiring spatial recognitions and orientation.  They also have a feature that gives me a percentile ranking of my performance. That is something I follow. I also added Sudoku to my daily schedule. I did well on the “very easy games”, but struggle with some of the “easy” ones.  By March 2018 I had noticed a small, but noticeable decrease in my Lumosity scores, particularly in the games requiring speed and visual-spatial processing.   I also recognized increasing difficulties in keeping my calendar and computer files organized correctly and up to date.  

RICHARD: I there anything else you would like to say about getting the diagnosis.

KEN: Surprisingly, there are even some hidden blessings.  The early diagnosis forced Virginia and me to specifically prepare for the future.  We have completed all the legalities that go along with death so that there will be no question of our desires on my passing, which gives me a great sense of comfort.  We are much more attentive to the time (and quality of time) spent with our family, extended families, and friends, who all know of my diagnosis.  I am also fortunate to have a local “Memory Connections” support group that meets every Friday for 5 hours at a Presbyterian church.

RICHARD: Thanks, Ken. It seems like the primary signs of your having problem involved effectively completing tasks rather than just a memory issue. Those are the kinds of signs that I observed with Kate. Before I learned more about Alzheimer’s, I was like most people. I thought the only problem was a memory issue like remembering people’s names or appointments. Those are the things that bothered Kate, and she was quite frustrated.

It also sounds like you have worked out a way to maintain a stimulating life. I am particularly interested in your support group. Perhaps, we can talk more about that next time.

KEN: I’ll look forward to it. Take care.