Atlantic Fellow for Health Equity Gloria Aguirre discusses her work boosting brain health in San Francisco through education, social connection, and creativity.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
Engaging in creative expression like painting, music, or dance can allow people living with dementia and their caregivers to relive old memories and create new ones. In addition, taking part in community art-making events or programming can help give people the social engagement they need for brain health resilience. Now, people like Gloria Aguirre are using the power of community art-making to have more conversations about brain health with marginalized communities.
Aguirre, an artist, community advocate, and Atlantic Fellow for Health Equity, is the artistic director at arts initiative Creative Minds and the community engagement manager at the UCSF Memory and Aging Center, where she advocates for long-term investments to improve health literacy and access to care for marginalized communities, such as San Francisco’s Latino community. Originally from Miami, Florida, she worked on Medicaid long-term care reform efforts with aging community members and families navigating care for children with autism.
In conversation with Being Patient editor in chief, Deborah Kan, Aguirre talked about how meaning-making through community arts can open conversations around brain health literacy — and about the power of creativity in the face of a dementia diagnosis.
Being Patient: When I first entered the Alzheimer’s space, I had heard so many people’s doctors and scientists tell me that an Alzheimer’s brain can no longer learn. I learned firsthand, through our conversations with people with dementia, that that’s not true at all. Your brain’s creative side can still grow even with a dementia diagnosis. Tell me a little about your experience and what we know.
Gloria Aguirre: Wow, that’s a big question. Thank you for it. I will preface this by saying I’m an artist, and I work in the community— I’m not a clinician. There are people who can speak to brain anatomy and the pathology of disease more specifically, but I think that what we have seen and what the research shows us is that creativity can really serve as a form of hope. In the context that we don’t right now have a cure for Alzheimer’s, which is the most commonly known form of dementia or other types of dementia— how do we harness the tools that we do have available to us?
In the brain research that clinicians like Dr. Bruce Miller and Dr. Serggio Lanata, who direct our programs at the UCSF Memory and Aging Center, have done and contributed to — we see that although there may be neurodegeneration or a loss of brain cells in a particular part of the brain, at the same time, there can be sort of a greater activation at other parts of the brain.
“What we have seen
and what the research shows us is that
creativity can really serve
as a form of hope.”
Those parts of the brain have been found to be linked to creative activities and experiences like visual arts, like movement, like music. There are these very deep ties that speak to why we should continue to be hopeful in the face of a situation where we don’t have a cure and there are actually few tools. There is a growing population of people who are experiencing these brain changes.
It’s been a source of hope, a way of being more curious about those changes in the brain and seeing really, where do they manifest? How can we, through behavioral changes and a greater awareness of what that looks like, plug into tools like art, like movement, that can build resiliency, maybe even in the face of loss?
Being Patient: It’s interesting because most of us have seen what music can do, like musical memories. I’ve tested this out in my mom with Tony Bennett, whom she used to love. I put on, “I left my heart in San Francisco,” and she can sing the words. It comes back to her, my mom, in a later stage of dementia. There is an understanding with music. I know a lot of research surrounds this, like why doesn’t Alzheimer’s destroy musical memories? But is it the same with all types of creativity? Like art, for example. If you were a painter, could you paint until a very late stage of dementia?
Aguirre: What I would say [is] the research that I’m most familiar with in this space, I think that it’s a developing field. These are questions that we’re still trying to answer. There’s a great interest in this, and [it] has been an investment and not only curiosity but an investment in the work from our center throughout its existence over the last 30 years or so.
What we have seen or what we know right now is their vision. For a painter, for instance, experiencing dementia, what we see generally is a change in their style, or that’s what I’m most familiar with. We’re talking about these deep memories of music and a connection that the individual may have to an art form, like a song. But then how does that deep connection change and progress alongside the progression of a brain changes.
“How can we, through behavioral changes
and a greater awareness of what that looks
like, plug into tools like art, like movement,
that can build resiliency, maybe
even in the face of loss?”
So, in visual arts, what we’ve most seen is changes stylistically. If someone previously was someone who painted a lot of landscapes and used a lot of pastels, their style may become more aggressive or vibrant colors or just have a very different aesthetic to it. That seems to happen in parallel with changes that are happening in the brain and neurodegeneration.
I’ve read about and had many conversations with clinicians about these bursts of creativity and sort of special periods that happen, and maybe we only really see them at this point or become more aware of them as a look back. That kind of the work that we’re trying to contribute to now is noticing those changes as they’re happening, and noticing how we can better support positive outcomes along the progression. Again, in the context of we don’t have a real solution yet.
Being Patient: Absolutely. Rebecca Chopp was a three-time university president, and she was diagnosed with early-onset Alzheimer’s. She now paints beautiful paintings despite not painting before diagnosis. It’s truly amazing what she has been able to create and unleash without understanding that she had an artistic talent to paint. This is just the perfect example that you can have unrecognized talent, and a brain with a dementia diagnosis can flourish and creativity. The power of that means we can change the message around having a diagnosis. I think that’s core and core to what you’re doing. Tell people about your program with the arts. How are arts and clinical research interacting at UCSF? Do you think what you do can be replicated?
Aguirre: I think that what we do can be replicated, and I hope that as we really start to contribute more to the literature around this, that’ll be something that emerges from this work. We are an arts and health collective, I would say. So, arts and health is this blending of artistic practices with approaches to health care and health systems.
The director of our program is a behavioral neurologist, Dr. Serggio Lanata, and then we have a group of artists, and other clinicians, neuropsychologists, other neurologists, fellows who come and have really multidisciplinary approaches. In our work, what we do is through dance, through visual arts, through photography, [we] find opportunities to open conversations around brain health, and around aging in general, because so much of aging has an effect on brain health, heart health, mouth health, like dental health. So many of these things contribute to diabetes, but we don’t think of them as brain health.
How can we use this tool that is an art piece, that is a dance, that is a song to open that conversation where we’re talking about meaning-making? In the context of aging, that we know becomes increasingly important. There’s a lot of literature around how, as we age, we’re looking for more meaning in our lives and are trying to sort of contextualize what that is: what is the purpose?
So, how can we start there, have an experience together, and use that to talk about brain health and talk about how all of that contributes to caring for our brain health over the life course? For me, one of the biggest sort of opportunities of this work is to do generational change. Where we’re having these conversations at an age and we work mostly with older adults but are trying to sort of slowly lower the age of engagement, I would say to be more in the midlife, and I think of that in terms of generational change.
“How can we use this tool that is an
art piece, that is a dance, that is a
song to open that conversation where
we’re talking about meaning-making?”
Really important in breaking some of these ivory towers around what it means to be an artist or have creative ability, or participate in dance or music, and also be a bridge, sort of a translator, between generations so that younger folks, children, youth are learning these concepts about taking care of their health and also taking care of sort of their humanity, through creative avenues.
Also sharing some of that information to older generations that may have other sorts of concepts around what it means to be an artist, what it means to engage with the healthcare system, what it means to have a medical evaluation of their cognitive health— which can be a pretty scary thing to talk about or even approach.
Being Patient: Absolutely. You deal a lot with health equity issues in your programs, and we know about the cultural stigma around the brain. Especially for the older generation, talking about something going wrong with your brain is almost a cultural stigma, and you might hide it rather than talk about it. It makes a lot of sense to use art to enter that conversation. In the cultural lens of creating more health equity, tell me a little about that, the role that this program has played, and what you’ve seen in terms of a result.
Aguirre: Thank you for the question. I think that maybe this would be best illustrated in an example. I can think of sort of a recent experience in the creative minds program. Thinking about this loop, right between sort of what’s important to us, what that means in the context of health care, and how we can bridge that to have a conversation that is bringing those two things together.
We partner with a community-based clinic in San Francisco that primarily serves Latino and immigrant populations, people who tend to live in vulnerable neighborhoods and circumstances and [have] many challenges in the city. At that clinic, over a four week period, we did a textile and painting project that [started] out as a conversation around what foods are important to us.
Thinking of the gustatory response even and, and what memories are activated when I eat something that is familiar to me or tastes like my mom’s pie or what have you. So, a conversation about that: the meaning-making and the sharing of cultures and the building of community between a group. Then thinking about how we translate that to more abstract ideas of art of symbolizing that through color through shape through a representation visually. As a third step, we bring in a doctor and have a conversation to explain what those colors mean and why that food [is] important to us. Then transition and move to a space where we’re talking about how food contributes to brain health and healthy cognitive aging.
Through the lens of diabetes, through the lens of cardiovascular health, through the lens of many different aspects of physical health that contribute, and then sort of bringing that all back to a conversation of learning and about why it’s important to contribute to science, why it’s important to remain engaged in community activities, why it’s important to remain engaged socially.
Ultimately, what we see in our program, and a big focus of what we’re trying to do, is to build and maintain social connection and avoid social isolation. We know that so much of that human connection is important in health outcomes, and is increasingly demonstrated in the literature for brain health outcomes. Again, how can we use this cool tool that’s kind of nebulous and sometimes scary, but it is art, to break all of this and just have a better outcome?
Being Patient: It ticks all the boxes. Social engagement is critical to living well and taking care of your brain. Talk to me a bit about that because we know that we need more diversity in research to solve the puzzle of Alzheimer’s and other dementias, for that matter. We need more data currently in diverse populations to understand how the disease behaves in the context of different cultures and populations. How does that translate to your programming? I want to delve into this so that you can be a model for other people because we need to get more diverse communities into research to find better prevention and cure strategies and treatments. What have been some of the outcomes in terms of the program around brain health and the socialization aspect of it—which is wonderful to have a dialogue about research participation. Has it been hard to make that bridge?
Aguirre: I have to say that, again, not to just speak so much praise, but we’re really lucky. I’m very lucky to work in an organization in a center where our leaders are open to views about how these things can come about in a way that is natural and good and is not extracted from the community.
When I think about when I hear words like “diversifying research” and “how these diseases sort of manifest in different cultures and ethnicities and races,” my prickly hairs tend to stick up a little bit. I get a little concerned because I don’t think that we should be talking about dementia or any disease in the context, specifically tying it so closely to race or ethnicity or these things that in science literature, and again, not as a clinician, but in what I’ve seen, being tied very closely to disease outcomes that are not really race-based, that are shown to be more circumstance based.
The lives that we lived, what is the lived experience of somebody who embodies this category that we talked about? When I say that, and thinking about recruitment science and sort of diversifying research and contributing to science, I think that we need a broader understanding of how this happens in humans.
How this happens in humans who have lived in a city versus [those who] lived in a very rural or nature-based location. How does this happen in humans who have greater access to education versus those who don’t, or maybe engaged with education later in life?
When I came to San Francisco, having lived mostly in Miami, Florida, that county is a majority-minority county, meaning that it is majority Latino and Black, or African American, and the minority are white or, or Caucasian English-speaking people. I came to San Francisco and the UCSF Memory and Aging Center thinking that I knew a lot about community engagement with these communities, but when I arrived in San Francisco, I understood that there was sort of a different aspect of this work.
I never in Miami had to go out to the community and try to engage Latinos, because we were all kind of just there. On the flip side of that, what I’ve seen outside of that, outside of Miami, is much more segregation. Like, who goes [to the] clinic, who goes to university, who goes to this supermarket versus another.
We have a really big strength in that our center understands the importance of long-term investment, of showing up without an ask, of showing up just to have a conversation, and that in and of itself being worth it. Beyond that, then seeing how that unfurls and the beauty and something that I hope that we’ll be able to really unpack through Creative Minds, are sort of tagline is that it’s the San Francisco community arts for brain health initiative.
All of this is in the effort to improve cognitive health outcomes through the life course. My hope is that through that program and through collaborating with doctors and collaborating with scientists, which can be challenging; we speak different languages. We both have a really strong base of curiosity and creativity.
“We have a really big strength in
that our center understands the
importance of long-term investment,
of showing up without an ask, of showing
up just to have a conversation, and
that in and of itself being worth it.”
The challenge comes in how we talk about that sometimes. How do we present that information and where do we see value in science and experience? What is the evidence? Coming together to tell that story about how showing up matters, how about introducing scientific topics, and focusing on education also matters.
Just the art is not enough to get the job done, and then how do we see curiosity about brain health and access to care and making links happen naturally? We have seen it and the really cool thing that’s happened. What’s excited many of us is that then, we see that our community artists are participants in the program— they themselves become advocates for the work for the program for research participation.
I don’t have to go out and say, we need Spanish speakers or we need Latinos. Latino is like a funky kind of word. I don’t even really identify with that word. I’ve always used the word Hispanic. All of these categories. I feel like we have to kind of try to move past them and just talk about why is it important that all of us are participating and engaging in science and all of us are participating and engaging in arts and humanities.
Being Patient: That is a wonderful point you make, and instead of the disparity lens, it’s more like the contribution. How can I be a contributor? That makes so much sense. The reason why Being Patient exists is because of bad communication. I’m the daughter of a geneticist, so I know firsthand it’s tough for scientists to talk to us laypeople, right? One of the reasons we started Being Patient is to translate the science for people so that they can have a better foundation and understanding. In your program, you’re engaging with populations of people and getting them engaged in art, and you’re teaching them a little bit about why art is good and socialization for the brain. If somebody is curious about research and wants to participate, how do you make that transfer or handover? Are you still involved?
Aguirre: I guess that is the space of a translator, right? I’ve always kind of been in that space, translating growing up in Miami and being of Cuban descent, translating kind of between my family and everybody else, both sides. So, I find myself doing that here in San Francisco for language-based reasons too, but then discipline.
How do we make that transition? What is really special about the collaboration that exists between us as a collective at the Memory and Aging Center is our desire to serve in that role. I don’t know that we always do it perfectly right. I think that one of the most impactful experiences that I had kind of right when I came to San Francisco was exactly this, being in a research space.
Someone who was diagnosed with early-onset Alzheimer’s came in for their annual evaluation with their care partner, who is his wife. That year, the care partner brought their 12-year-old child because the child got to an age that they started asking questions about “What does this mean? And why is my dad acting this way?” The mother, her only solution that she could think of, was to bring her son to the visit, and tell this to the doctor, a geriatrician who is completely unprepared to have a conversation with a 12-year-old to explain this. He’s not a therapist.
Talk about all of these words coming at you. Then on top of it, doctors are tasked with [having conversations like] this, [and] clinicians [work] in very short timeframes. There isn’t even the space to have sort of the level of humanity that they might want to offer to that conversation.
So, to get back to your question, the strength is that all of us, to some extent, feel comfortable speaking about both science and art. I might preface my responses to a more scientific or clinical question with the “I am not a clinician,” but I have certainly read a lot. I am very highly trained because of these other informal connections to the work and just being very immersed in it constantly.
I won’t speak as a clinician, but I have a lot of access to that information. Similarly, our clinicians may not speak as artists, but they are very connected to the work that we’re doing. Many have very personal investments and connections, you know, family histories, or people in their personal lives, or may participate in the arts themselves. I think that there isn’t ever really the kind of handoff that you described or that I hear as kind of the premise of your question.
It is very integrative. I don’t often go into research or clinical spaces at UCSF on campus, but I wouldn’t hesitate to do that if there were a participant there that might feel more comfortable. If they saw me there, right at the beginning of their visit, that is totally worth it to me. That feeling and that commitment to making it feel good for people who are contributing to research and who are perhaps experiencing brain changes and are just sort of going through that journey of aging is worth it to me and all of us. That’s why we keep showing up.
Being Patient: Absolutely. Gloria, thank you. I want everyone to know about what you’re doing. Creative Minds is a good formula for health equity to include everyone to be inclusive. Of course we’ve done interviews on this before, but it never ceases to amaze me, the power of creativity, even with a dementia diagnosis. So thank you, Gloria, thank you so much for sharing your experience and your insights with us.
Aguirre: No, thank you, Deborah. Thank you so much for the inspiring work that you’re doing. Honestly, it is something that is so important to me, and I just feel so lucky to have had this conversation with someone who is similarly committed and working in a space of spending the time and, and being there with folks who are experiencing changes and all of us.
Katy Koop is a writer and theater artist based in Raleigh, NC.