Caregivers need community — yet many feel they don’t have a community to turn to. Dr. Mary S. Mittelman shares her decades-long experience researching how we can best support caregivers with community interventions.
Having a support system is necessary for caregiving, for help when it’s needed, for moral support, for exchanging knowledge, and more. Yet many people caring for family members with dementia feel they don’t have the community they need. In fact, over nine in 10 caregivers are sleep-deprived, and many are facing burnout. Without a support system of family and friends, it’s impossible to provide the best possible care for their loved ones with dementia.
Dr. Mary S. Mittelman, in her decades of research on community interventions, is working to better understand how to give caregivers the support they need. Mittelman, an epidemiologist, is a research professor at the NYU School of Medicine Department of Psychiatry. She has been developing and evaluating psychosocial interventions for people with cognitive impairment and their family members for over two decades. For 20 years, she was the Principal Investigator of the NIH-funded study of the NYU Caregiver Intervention (NYUCI).
Over the past decade, Mittelman has been working on these interventions in collaboration with people living with dementia and with caregivers. In particular, she is the founder of the memory choir, The Unforgettables, and her work inspired the creation of The Amazing Grace Chorus. She’s also currently working on a clinical study seeking to understand the experiences of couples across different stages of dementia, which is currently recruiting participants. She sat down with Being Patient EIC Deborah Kan to discuss her research on community interventions and the support that caregivers need.
Being Patient: How did you first get started with your research?
Dr. Mary S. Mittelman: I was first interested in finding out how to help family caregivers because, in my own family, we had a situation that might have been helped if there was somebody to talk to. I got to NYU with a proposal to do a survey of families but met four women who were already helping family caregivers in the mid-1980s at NYU in what became the Alzheimer’s center. So, I decided rather than just do a survey of caregivers, I would try to find out whether what these four women were doing at the time as volunteers, although they had professional degrees, would help family caregivers. I wrote a grant proposal, and I submitted it to the National Institutes of Health, and it was funded in August of 1987. Ultimately, it was funded one way or the other through 2010. During that period, we were able to demonstrate both the short and long-term effects of the intervention that I modeled on what the clinicians at NYU were doing.
Being Patient: So, what did that intervention look like?
Mittelman: The intervention, which we call the NYU caregiver intervention, includes several components. It starts with a comprehensive evaluation of the needs of the primary family caregiver, which in the original study was a spouse or partner. Then there are six counseling sessions, one individual session with the primary caregiver for the family members that he or she says are important. The family members are defined by the caregiver, not by us, so it could be a non-blood relative. Then, there was another individual session within four months of the first evaluation. We also suggested that the caregivers join support groups that met weekly. In addition, we provided them what we call ad hoc counseling, which is the opportunity to call the counselor with whom they had the sessions anytime, more or less within reasonable hours, but anytime, and the family members could call as well.
So, we designed a rigorous randomized control trial in which the NYU Caregiver Intervention was compared to usual care at the time. The one thing that the people in the control group who got the so-called usual care didn’t get was family counseling. Over time, we enrolled 406 caregivers over a nine-and-a-half-year period. We were able to demonstrate huge benefits for the family caregiver, starting with an improvement in their sense of social support, mostly from family and friends, and we think that came from the family counseling sessions. We have a lot of reasons to think that because the control group got everything else except the family counseling. We also saw very quickly a reduction of stress reactions of the caregivers to the behaviors of the person for whom they were caring spouse or partner. Somewhat later, but within the first year after the intervention was started, we saw a significant reduction in symptoms of depression and a significant improvement in physical health for the caregivers. Improving social support is what we think is the mechanism that really affected all the other outcomes: stress, depression, and physical health. By improving social support, we improve the caregiver’s well-being, translating into a one-and-a-half-year delay in residential care placement.
“By improving social support, we improve the caregiver’s well-being, translating into a one-and-a-half-year delay in residential care placement.”
Being Patient: That doesn’t surprise me because, as a daughter of a mom with Alzheimer’s, my sister and I have leaned on each other immensely, and I couldn’t imagine this journey alone. You need support in this journey because it’s a hard journey. Did you only look at caregiving in terms of the later context of this journey? Or was it from the beginning?
Mittelman: We enroll people who are caring for a spouse or a partner at every stage of dementia. We’ve done that in every study we’ve done of the NYU Caregiver Intervention, of which there have been many now, and we didn’t see a difference in the outcome. For people who enrolled in the study earlier and those who enrolled late, we only looked at the change over time from when they enrolled. As I said, the improvement in social support was a key factor. You are lucky if you have the support of your sister and she of you. Many caregivers, especially spouses, don’t want to tell their other relatives. They don’t even want to tell their children about this problem. They try to pretend everything is normal. One of the things that happens is that people start to stop talking because of the children problem. Adult children probably recognize that something is different, but their parents aren’t talking about it, so they don’t talk about it. One of the things that happened in the counseling is that people are encouraged to talk about their needs and also what can best help the primary caregiver.
“One of the things that happened in the counseling is that people are encouraged to talk about their needs”
Being Patient: I want to move this conversation to memory choirs since you were instrumental in starting this movement of choirs like The Amazing Grace Chorus, who we interviewed in the past. Tell us about that process.
Mittelman: In 2011, I was at a conference in Washington, DC, and I had previously evaluated with the Museum of Modern Art, called the Meet Me at MoMA, which is an art appreciation program for people with dementia and their family members and demonstrated significant effects for both the person with dementia and the family member who went together to these educational events. Someone asked me if I would present that in Washington, and then she also asked me, sort of demanded of me that I stand on the stage and lead a part of a canon, in which I had to sing “taco salad taco salad.” I said no about one hundred times, but she persisted, so I did it. And I’m standing up on the stage and looking at the audience of people who are either in government or research administration, and, and they’re all smiling, and they’re all singing along, and I thought, “Wow, this might be much better than just the museum visit.”
So, I founded the first chorus in 2011 for people with dementia and their family members. The only eligibility requirement is that a family member or close friend has to commit to coming to all the rehearsals and the concerts that follow. It’s probably the most fun thing I did. We started in 2011, and they’re still rehearsing and performing today. They named themselves The Unforgettables, and during the pandemic, they rehearsed online. About one hundred people joined because some people who moved away too far to attend actual rehearsals joined online, and people obviously enjoy it.
The audience enjoys it. Sometimes people ask me, and I’m always a little annoyed and also gratified at the same time, and they say, ”Well, which of those people have dementia?” Because you can’t really tell. They learn new songs for every performance, and it obviously provides benefits. It doesn’t have any negative side effects that I can think of, and others have been inspired to do it as well. Because I’m a scientist, I did an analysis of the results, which were published and showed benefits for both the person with dementia and the caregiver.
Being Patient: What a wonderful thing. Music is a way for everyone to bond, especially with people diagnosed with dementia. There are other groups doing it. It seems like, you know, you might have seeded it, and it’s growing. So, that must be wonderful to see.
Mittelman: It certainly is. The other thing is that when a person has dementia, they don’t lose all their abilities at once. Sometimes they find abilities they didn’t know yet. In the first chorus, there was a man named Leonard, who I heard sing at the concert, and I went up to him and I said, “Where did you study singing?” He said, “I never sang until I got dementia and joined your chorus.”
He had the most amazing solo voice, and until he died three years later of something completely unrelated to dementia, he had a solo and every concert, and he didn’t know we had a voice.
The other important lesson is that dementia doesn’t affect the whole brain. There are parts of the brain that are arts-related, and we have programs in our Family Support Program that are based on that. These programs bring out parts of the person which may never have been found.
“When a person has dementia, they don’t lose all their abilities at once. Sometimes they find abilities they didn’t know yet.”
Being Patient: How can our community members learn more about community intervention programs like memory choirs and your other work?
Mittelman: It depends on where you are. There are Alzheimer’s Association chapters and other such organizations all around the country. There are other choruses now, as you pointed out, for people with dementia. There’s a huge effort called Music Mends Minds on the West Coast. That was started by a friend of mine that is all up and down the West Coast. We’re also trying to start an ongoing music program here in New York.
People unfortunately, when they think about a disease, they think about medical care. I think Alzheimer’s disease is an example of a kind of illness where really comprehensive care is important, but we’ve also shown that we can reduce the severity of symptoms by providing people with a good quality of life.
This conversation has been edited for length and clarity.
Katy Koop is a writer and theater artist based in Raleigh, NC.