The care partner pulled me aside on the second rehearsal of the session, eager to ask some questions. But first, he offered a few comments. Frank, care partner for his wife, Sarah, is new to Good Memories, referred by a friend. Sarah, in the early stage of dementia, had settled in nicely and was at the snack table, chatting with a few other singers. Frank began by expressing how happy he was to have found Good Memories and talked about how difficult it is to find fun activities that he and Sarah can do together. “Right now this is the only thing in our week that isn’t a doctor appointment, and the only place where Sarah isn’t treated like a patient,” he said. And then he said, “I have to ask you—are there other people here, in this choir, who have dementia? If so, I can’t tell who they are.”

My first response to him was, “Frank, I have to tell you… you just totally made my day! That’s exactly what we’re about!” I went on to describe one of the lesser-known features of the Good Memories program.

We all wear name tags, I explained to Frank, but they only have our first name. We don’t wear labels like “person with dementia,” “conductor,” “volunteer.” We’re there to make good music and to have lots of fun, not to put anyone in a box. We’re just all on this journey together.

People coming to Good Memories do not have to have a note from their doctor or some kind of official diagnosis in order to walk in the door. It’s enough if someone has a concern about their cognitive health. Many of our singers have been diagnosed with either mild cognitive impairment (MCI), or one of the dementias—but it’s not something we ask about.

Often people share with us their situation about what they—a person with cognitive issues or a care partner—are struggling with, and that opens the door for a conversation about how difficult and stressful it can be. However, that’s a door that they open, not us. I’m acutely aware of what an honor it is to be invited into their experience, to witness that kind of tender vulnerability.

So Frank’s correct: it is difficult to tell who’s who, especially after we’ve been rehearsing for a while. Because, as Jonathan says, “Singing in a choir ‘wakes up’ the brain” and, after a period of rehearsal, our singers with dementia are more verbal, more emotionally engaged, and enjoying our snack break, just like everyone else.

But I must admit that I’m paying less attention to “who’s who” as much as I’m wanting to make sure that Sarah feels welcomed, that she no longer has that anxious “Where am I?” expression, that Good Memories becomes a safe place where she—and her early-stage dementia—are accepted, just the way she is. And I’m focused on having Good Memories be a place where Frank can relax for 90 minutes, knowing that the whole community will wrap around both of them with kindness and joy.

Even though we don’t label people in Good Memories, we are, as you’ve probably heard, a choir for people with early-stage dementia and their care partners. So I’m sometimes asked to talk about what early-stage dementia looks like. I like this quote from Dan Kuhn, the nationally known dementia expert, who offered his expertise to train our Good Memories volunteers, back in 2018, when we first began. Dan recently succumbed to cancer and will be sorely missed, but his wisdom lives on in many ways, including his quip: “When you know one person with dementia, you know one person with dementia.” How right he is!

At the same time, there are some characteristics that are shared by a number of people with early-stage dementia. Here’s a description from the Alzheimer’s Association website:

Dementia affects everyone differently and the first signs of dementia are often relatively mild and not always easy to notice.

Many people at the early stage of dementia stay largely independent and only need a bit of assistance with daily living.

What are the early-stage symptoms of dementia?

As a very rough guide, the early stage of dementia lasts on average about two years.
In the early stage of dementia, common symptoms start to affect the person’s daily life.

Memory problems
Difficulties with memory are the most well-known first signs of dementia. For example, a person may not recall recent events or may keep losing items (such as keys and glasses) around the house. Memory loss is often the first and main symptom in early Alzheimer’s disease. It is also seen, although less often, in early vascular dementia and dementia with Lewy bodies (DLB). Memory loss is not common in early frontotemporal dementia (FTD).

Difficulties in thinking things through and planning
A person may get confused more easily and find it harder to plan, make complex decisions (for example, about finances) or solve problems.

Language and communication
A person may struggle to find the right word in a conversation, or they might not follow what is being said. Speech can also be affected when someone with vascular dementia has had a stroke.

Poor orientation
A person may no longer recognize where they are and so get lost, even in a place that is familiar to them.

Changes in mood or emotion
The person may be more anxious, frightened or sad, and so at risk of depression. It is also common to become more irritable—perhaps in frustration at lost abilities—or easily upset. A person can often be more withdrawn, lack self-confidence and lose interest in hobbies or people.

These symptoms are often mild and may get worse only very gradually. It’s often termed “mild cognitive impairment” (MCI) if the symptoms are not severe enough to be diagnosed as dementia.

If you’re concerned about any these symptoms—in yourself or in someone you care about, consider making an appointment with a medical professional. An accurate diagnosis can help you know about interventions that could be helpful. And there’s increasing evidence—including our own research just published last month in the “Journal of Alzheimer’s Disease”—that singing is beneficial for the well-being of everyone, including those with cognitive challenges. How about singing with us?

Stay tuned, in an upcoming blog I will share what you can do to delay cognitive decline.

Sandy Siegel Miller is the program director and “keeper of the culture” for Good Memories, the only choral program for people with early-stage memory loss and their care partners to sing together, enjoying familiar music that they love. Our professional conductors and pianists make it fun. No audition, no pressure—just a great time. The choir is a fun, upbeat community that includes people with memory loss, their care partners, and volunteers. No musical experience or training is needed. We welcome anyone living with Alzheimer’s or another dementia who can attend the structured weekly rehearsals and, best of all, wants to make great music and new friends! For more information, visit SoundsGoodChoir.org/goodmemories or call 630.395.9542.