Roadmap to a “Persons With Dementia” Support Group

 In Featured, Inspiration, News

by Kari Snyder

Many years ago, I worked at a small nursing home in Minneapolis. It was my first experience being paid to work at a senior facility. I had spent my growing-up years helping care for my grandma, who was often between a nursing home and the hospital, so I was accustomed to the long-term care scene. The facility I worked in cared for some very, very old folks who had a combination of health issues. And, being that it was a small facility, I got to know the residents well. One such resident was Alice. She was limited to second floor—the floor designated for heavier care– due to her dementia and inability to walk. What set Alice apart was her enthusiasm for wheeling around in her wheelchair at rapid pace and the magic that happened when she got close enough to a piano. Alice’s dementia was pronounced and my guess was she was living in the mid-later stages of Alzheimer’s disease. But, when she rolled up to that piano, she could make it sing like no one else could. She wasn’t able to string together a simple sentence, but she could perform classical pieces of music with near perfection. Her musical abilities hadn’t been touched by the disease. It was eye-opening to see how dementia affected her life. Helping those with Alzheimer’s has been close to my heart ever since.

Alzheimer’s disease (or any form of dementia) is, most certainly, a tough diagnosis. I’ve attended the annual “Meeting of the Minds” conference in St. Paul for many years. This event is put on by our local Minnesota-North Dakota chapter of the Alzheimer’s Association. One session included a panel of three couples and one individual who addressed mild-cognitive impairment and early stage Alzheimer’s—diagnosis they were living with. They talked about the importance of being able to speak about the diagnosis…to let those around them know what was going on, and have friends to talk to who understood what they were going through. This panel group talked about the diagnosis being hard to share, but once they let their “team” know what was happening, those folks had their back. It gave them a new sense of freedom. They didn’t have to worry about saying the wrong thing or forgetting words mid-sentence. They were free to continue going out to restaurants, play golf, take trips, and enjoy daily life. They were supported.

My encouragement from that speaker session was that everyone does indeed need a team. We can be part of that team. According to the Alzheimer’s Association, 5.8 million Americans (as of 2019) are currently living with this disease. So, I think it is safe to say that you probably know someone or you yourself are experiencing it. This includes a number of people at Prince of Peace. Some time ago, I had a member sit down in my office and tell me about what it felt like to have memory loss issues. He described how scary it was at times and how frustrated he felt not being able to remember how to drive from home to his favorite breakfast spot. He wondered if he was the only one dealing with these issues.

With this gentleman in mind, I reached out to our local Alzheimer’s chapter (MN/ND) and inquired about finding a dementia support group for him. (There were many support groups for caregivers, but none for those living with this dementia.) I had looked down many avenues but couldn’t seem to locate one anywhere around the south metro. The reason for this was that there simply weren’t any.

The exciting news was that I was told the Alzheimer’s Association was hoping to pilot a program for people living dementia and they asked if I’d like to help. So, last winter, I went through the group facilitator training program. Then I helped launch and lead the first Persons With Dementia support group in St. Paul at the Neuroscience Center. I’ve been leading that group for six months. The folks that attend this group are wonderful and this setup gives them a chance to voice their concerns, frustrations, tips, funny experiences, and, most importantly, give hope to each other. Dementia, which is often progressive, is a challenging disease that we don’t like to talk about. My prayer is those living with it will have the opportunity to have a voice and gain support from others who completely understand what they’re going through.

Though my time with Alice is long gone, she taught me an important lesson. Dementia may create deficits, but there are always ways to connect. We just need to look for them. Through support groups and a variety of other activities like simple daily walks, art projects, quiet time together, sporting events, family time, and worship, we can enjoy moments that show we care for one another. With a sense of awareness and the help of our community, we can support folks living with Alzheimer’s, mild cognitive impairment and other types of dementia. If you are interested in joining our Persons With Dementia support group, please let me know. I would be more than happy to talk with you and your loved ones. We’ll be a team.

Kari Snyder is the Senior Adult Minister at Prince of Peace. You can contact her with questions by email or at 952-898-9357

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