Finding or forming Local Community Groups

wrote a great response on another post, and I asked if he would mind if we shared it here as well. So with his gracious permission:

I am not going to answer your question exactly as posed as I am not a psychologist or counselor What I can do is describe the support group we have developed and what has happened with those who attend.

When I was first diagnosed there wasn't much to do except take Aricept, et. al. Shortly thereafter, my neurologist talked to me about a new drug - Leqembi. I said, "Why? I know how this ends" (I watched my father die from Alzheimer's some years ago). My neurologist explained how the drug works and that if I took it, and and made LIFESTYLE changes, I could have a very long, happy, full, and successful life.

He also said I would have a support group.

Shortly after that, my neurologist asked my wife and me to head up the support group. To be clear, we had no idea what we were doing. But, time was of the essence so we found a meeting room in a library.

A few months later, we had outgrown that.

Then, a large room at our hospital opened up. We have met there ever since.

And our support group continues to grow as more and more people are tested.

A little about our meetings - I want to be clear other meetings may be different. We had no plan to work from. Nevertheless, what we developed has worked well for us since it fits our style. It also constantly changes as people's needs change.

With those caveats - we meet at noon on the same Monday of each month. We break into groups. I will describe each one.

The first meeting is for all those who have been diagnosed but have not yet qualified for a drug. They, and their support people, are invited to attend. The purpose of this meeting is for attendees to be able to ask questions and to get responses from those who have already been on the drugs; as well as their support people. We typically have two patients present to assist my one and me - one from the Leqembi side (I am also one) and two from the Kisunla side. Everyone sits around tables that we put in a big square shape so we can see each other. We typically start by going around the room so each person has a chance to introduce themselves and to ask any questions - or talk about their situation.

It is pretty normal for at least one person ti arrive crying. I always pull them aside to talk to them and usually talk about how they are sad and scared now. But, by the time the meeting is over they will be smiling. That has always happened.

After 90 minutes with that group, the rest of the people join us. Those are the people who are on Leqembi, Kisunla, and other drugs including lithium, and their support people. At this meeting, my wife and I give updates we have received. Our neurologist (schedule permitting) gives a report and answer questions. His nurse, who handles many things including insurance, will also give updates.

We then break into groups. I take the patients to a separate meeting room. We talk about any issues any person wants to bring up. Those have included things like -


How people are doing with driving and the potential their days doing that may be limited?
What things they are doing to plan for the future (sell their house, etc.)? What changes they have experienced in their cognition, health, etc., since they started on Leqembi, Kisunla, or something else? How are they helping those around them to deal with their Alzheimer’s?
New patients will also have questions for the group. It is a great time to talk about issues they are be dealing with and wondering how to handle.

The support people often talk about -
What things they are you doing to plan for the future? How they you helping other family member and friends deal with their patients diagnosis, etc.?
What issues are they struggling with?

To be clear, those present direct what things they want to talk about. If we don't have answers, we often check with the appropriate person after the meeting to get them some kind of response which we forward in an email.

As you can see, people get a chance to talk about what is important to them, to get advice from others who may dealing with the same issues, and to get the latest information.

Is this important? It is important enough that people seldom miss. It is important enough that we have had to expand the size of the rooms where we meet and are about to have to do that again. It is important enough that instead of worry, people can get real knowledge of how to live a FULL life. And, it gives people a place to talk to others about issues and concerns.

Does this help? We are adding another group. There are lots of people who have been declined from the medicines and have no place to go. My neurologist has asked my wife and I to start a new support group for those. At their meetings, they will also hear from the neurologist, the hospital social worker, the neurologist's nurse, and other medical and social workers. Our goal is, again, to give them hope. While there may not be a treatment today, that does not mean there won't be one in the near future. In the meantime, they have a place to go each month to talk with others who are dealing with the same issues and to learn ways to live with this.

How important is all of this? We know the drugs help. But, as my neurologist says, it doesn't do as much as the lifestyle changes - and the hope people can have.

My advice for your parents and loved ones. See their neurologist. Then, get them to a support group. Keep in mind they can attend one and if they don't like it they can find another one. Help them to understand that in most situations this no longer has to be a death sentence. It does require effort, and lifestyle changes. But, a person can still have an amazing life full of fun, family, friends, and HOPE!