‘Not Shy’ About Alzheimer’s: A Retired Social Worker on the Power of Being Open

This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.

When you’re concerned about Alzheimer’s disease, it can be difficult to determine what symptoms are normal aging and what is cause for concern. Betsy Groves, now an Alzheimer’s advocate, is familiar with navigating this challenging territory. 

Groves had a career as a clinical social worker in the Boston Medical Center in the Department of Pediatrics where she founded a counseling program for young children affected by trauma. Then, she taught courses in early childhood mental health and development at Harvard’s Graduate School of Education. 

In her 60s, she began experiencing problems with focus and remembering the names of the students, but she thought it could potentially be normal aging.

“I began to have trouble wandering a little bit on my studies or my lectures and also forgetting people’s names in my classes,” Groves recalled. “I didn’t know what this was about. I was clueless about what it was.” 

As her concerns grew, a friend who was a nurse practitioner advised that Groves get a neuropsychological evaluation. The results indicated a diagnosis of Alzheimer’s, but the search for a neurologist to confirm the diagnosis took eight months.

It wasn’t until 2021, at the age of 72, that Groves was able to get a lumbar puncture that showed amyloid in her cerebrospinal fluid and get an official diagnosis. 

Drawing from her career as a clinical social worker and an instructor, Groves now is an Alzheimer’s advocate who finds power in being open about her diagnosis.

“It’s complicated: Those of us who live with Alzheimer’s have a range of thoughts or ideas about who, what, where, and why [we] want to share this experience,” she told Being Patient. “Because I’m a social worker and I’ve always been an advocate, I didn’t want to be shy about talking about this. I ended up, along with my granddaughter, on the front page of The Boston Globe … [It’s] this wonderful picture of my granddaughter, Cora, and me standing together in our backyard, holding up our hands like this, saying, ‘This is the face of Alzheimer’s.’  We were very pleased about it. As I said earlier, I’m not shy.”

Groves served on the 2022-2023 National Early-Stage Advisory Group and continues to do advocacy work for the organization. She lives with her husband, Tim, in Cambridge, Massachusetts. They have two adult daughters and three grandchildren.

Groves shared her experience with diagnosis, living with Alzheimer’s disease, and advocacy work with Being Patient video journalist Mark Niu.  Read or watch the conversation below. 

Being Patient: What were some of the early signs you noticed while you were still working?

Betsy Groves: What I noted was, with my teaching at Harvard, that I began to have trouble wandering a little bit on my studies or my lectures, and [I was] also forgetting people’s names in my classes. I didn’t know what this was about. I was clueless about what it was. 

Fortunately, I have a friend who is a nurse practitioner who knows something about Alzheimer’s, and she suggested that I get some neuro psych testing. The neuro psych testing was not good. It indicated fairly strongly that I had some significant problems with memory. 

Being Patient: Could you tell us more about those symptoms and how old you were?

Groves: [I would forget] students’ names. I would feel like I was floating off when I was lecturing. I would kind of get out into space somewhere. I’m not sure that I was focused anymore. I didn’t know what was going on. I wasn’t even aware of it, really. That’s what the earliest symptoms were for me. I’m now 75 years old. This was about five years ago, [so I was] maybe 70 or 69 years old. 

Being Patient: How did you get diagnosed with Alzheimer’s disease? What was that process like?

Groves: I did a lot of tests. I went to the physicians. The outcome after all of these tests was devastating. I had very, very strong indications of Alzheimer’s disease. Then this was confirmed later by a lumbar puncture. The blood—I can’t quite remember all this, but there was this very final diagnosis that I had early Alzheimer’s disease. 

I wanted to know what was going on because I knew that there were changes with me, and my husband knew it very well. Once we got the final diagnosis, that was a huge change in our lives, to say the least.

Being Patient: How did you react after getting that diagnosis?

I was devastated. I can remember walking along the bike path. I [received] a call from someone from the Alzheimer’s Association who wanted to just check-in. They knew, and I already had a connection with them. 

“Once we got the final diagnosis, that
was a huge change in our lives, to say the least.”

I [was] talking with her; she was a social worker and just trying to think about what this meant for my life. [It was] a huge change for my life. I was still teaching part-time, and there’s a process that you have to just deal with what life deals to you. So, that’s where I was, and that is still where I am. 

Being Patient: You’ve been involved with advocacy with the Alzheimer’s Association. Tell us about that.

Groves: A social worker somewhere along the way said [I should] connect with the Alzheimer’s Association. I did that, and I became very involved with their association. I served a year, maybe a year and a half, on their national panel of early-onset Alzheimer’s patients. The [headquarters] is in Chicago, and my husband and I did a couple of trips to Chicago to do in-person presentations and participation. 

I can also remember being invited to go to Houston, Texas, to talk to a group of physicians about the journey around Alzheimer’s. I can’t remember the specifics of it anymore. It was a great trip. They were very receptive and interested in it. These were general practitioners, not specialists. 

I think that general practitioners have learned to ask specifically about memory for patients who are older, in mid to late life. So, that was a wonderful experience for me. Another experience for me is being able to talk to experts on trying to understand and decode the specifics of Alzheimer’s. 

There’s an Eisai group just within walking distance with me who are doing research on Alzheimer’s, and so I came up and talked to them about what it was like to live with Alzheimer’s, and it was a terrific experience.

Being Patient: What inspired you to speak so publicly about living with Alzheimer’s disease?

Groves: It’s complicated. Those of us who live with Alzheimer’s have a range of thoughts or ideas about who, what, where, and why [we] want to share this experience. Because I’m a social worker and I’ve always been an advocate, I didn’t want to be shy about talking about this. 

I ended up along with my granddaughter, on the front page of The Boston Globe. I don’t know how many years ago, maybe two or three or four years ago. [It’s] this wonderful picture of my granddaughter, Cora, and me standing together in our backyard, holding up our hands like this, saying, “This is the face of Alzheimer’s.” 

“Those of us who live with Alzheimer’s have
a range of thoughts or ideas about who, what, where,
and why [we] want to share this experience…
I didn’t want to be shy about talking about this.” 

I don’t feel shy about talking about it. I don’t talk about it to everyone; people who know me, know me. I’m still singing in a chorus. I’m very active walking. I’m singing in two choruses, actually.  

Being Patient: Do you find that being involved in music with these choruses helps with your Alzheimer’s disease?

It’s my therapy — singing. I’ve always been. My grandmother was a concert pianist, and I think that she really influenced me about music. I [have loved] to sing ever since high school and college. My husband and I now sing in two choruses. I can retain music in my head in a way that I cannot retain other information. The music is in a different place in the brain. 

That’s helped me psychologically a lot to be able to still do these two choruses. And I actually still, so I probably said earlier, I’m living in Cambridge, and I’m able to take the MBTA down to the choral practices back competently. 

“I can retain music in my head in a
way that I cannot retain other information.
The music is in a different place in the brain.”

My husband agrees with me that I know exactly what I’m doing. At some point, that probably won’t happen anymore, but again, it’s one day at a time. I’m doing what I do now. I just sang last night for a rehearsal. 

Being Patient: What does your routine look like now that you’ve been living with an Alzheimer’s disease diagnosis for years? What have you found to be helpful?

Groves: I’m really a zombie in the morning. I have a slow start in the morning, and then by mid-afternoon or so, everything comes online, or many things come online, but not everything. I’m fortunate. I’m fully retired, so I have my own routine. I walk a lot, and I think exercise helps hugely. You keep on moving, and you keep going. That’s been helpful, and we have contributed to the Alzheimer’s Association and are active in their activities.

I’m sure for my health, but also for my mental health, exercise helps me hugely. I think diet, you know, that’s a huge category there. My husband and I both tend to eat more vegetarian-oriented meals, but we don’t always do that, so we have hamburgers, and once in a while, we might have a steak or something like that. I think exercise and diet is important.

Being Patient: Your grandchildren are also a big part of your life. Tell us about that.

Groves: Oh, we love them. They don’t care. We always say, “If Mimi says something that seems a little out there or you’re not sure what she’s doing…” they could care less. They just like to play, and I can still play very well. I love it with them. 

“I don’t feel shy about talking about it.
I don’t talk about it to everyone;
people who know me, know me.”

[My] granddaughters are the lights in my life, and my husband’s life too. We live close to both of them, so we can see them once or twice every one or two weeks. It’s a blessing.

Being Patient: What’s next for you?

Groves: I don’t know what’s next. I don’t, and I don’t choose to know. We know that certainly I will decline. I know that I will need more significant care, and whether that is care that comes to the home or whether they’re assisted living— as I decline, I will need more care. 

For my husband and I both, we’re not going to spend too much time thinking about that. Maybe we’re avoiding it. Of course, we are. I mean, there’s avoidance, of course, but we know it’s coming, so it’s kind of a day at a time.

Katy Koop is a writer and theater artist in Raleigh, NC.