Deciding to Donate: Barriers and Benefits of Brain Donations for Diverse Populations

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Joining us today is Dr. Crystal Glover, health equity and aging researcher and leader of the Outreach and Recruitment core at the Rush Alzheimer's Disease Center. She's an associate professor at Rush University Medical Center and specializes in mixed methods research, combining qualitative and quantitative data within a single study. Through her research, she studies areas of health equity and health disparities, psychosocial determinants of health, like education and employment, and healthy aging for underrepresented communities. Her current research, funded by the NIH studies, decision-making regarding brain donation among older adults from racial, ethnic, and economic minority groups. As part of the fall 2022 ADRC meeting, Dr. Glover presented and moderated a collaborative session on the importance of increasing brain donations and tissue samples from older adults of underrepresented backgrounds. Dr. Glover, welcome to Dementia Matters.

Dr. Crystal Glover: Hello there, Dr. Chin. How are you?

Chin: I'm good, and I'm excited to have you on, and your talk, your presentation was fascinating, so I'm hoping to capture that with our podcast today. In your presentation, you discussed a shift from health disparity to health equity, and I thought that was really important. What does that mean to you? How do we go about this and make that shift as a collective group?

Glover: Well, I think the first part is what does it mean to shift from disparity to equity is really moving away our research. Moving away from description and identification into research as solution generation. So really thinking through, okay, we have this big, vast body of work, let's just say, in our common field, Alzheimer's disease and related dementias. We have the strong foundation. How can we move this forward to build solutions? That's how I see the shift from disparity and equity. A lot of time in disparity work has really become synonymous with, all right, we're going to compare everybody to middle, to high socioeconomic status, non-Latino whites. That's just not the way to go anymore, and I think researchers are, one, becoming hip to that and moving into equity to say, all right, what can we do? What are strengths? What are coping skills protective factors in different groups? But also, what's the intersectional lens? So people just don't belong to one group. How can we understand, say, race, gender, and socioeconomic status together in terms of a relationship to aging and ADRD, but then also what's going on within these groups to say, are other folks at higher risk or not? How are they coping? So that's how I see a shift to a richer, fuller description of the issues and how to address issues in aging.

Chin: I appreciate your expansion of that definition, as well as then this, what I would think of as the next appropriate step of what can we do about it? So it's one thing, and it's important to identify an issue, but then equally important is to help people when you've identified that issue. So you're talking about making that next important step. For our participants who give so much time to research, this is really about them and then the community at large.

Glover: I agree, and I see myself and also others in the field, of course, being able to first understand the richness of what's come before us, the work, all the good work that's there to say, okay, this is what's been done, to really understand the lived experiences of people that we're looking to have participate in research, but also those who are current participants, because you can't really move to equity if you don't know who you're serving through research. So that's the first step, and then you also can't move from disparity to equity by not knowing what's already been done. And then just being bold enough methodologically, demographically, collaboratively to say, this is what we're going to do, and this is how we're going to do it: have intersectional pieces, mixed methods research, understanding and incorporating rich lived experiences, and then other folks really taking it to say, this is what we're going to do about it or what we'll set forth.

Chin: For our listeners, when Dr. Glover says ADRD, Alzheimer's disease and related dementias, or Alzheimer's disease and related diseases, however, a person wishes to choose that. You know, one of the themes I took away from your presentation is this importance of bi-directional relationships between study participants and researchers. Knowing how important that relationship is, how do you apply it to brain donation, where the participant is making this ultimate gift to science, but no longer physically present in the research itself?

Glover: I think, Dr. Chin, it would be kind of three elements. The way I think about it is, one is fulfillment of almost final wishes through research. So if the person is a research participant, so Everyone who's donating their brains in relationship to our center is doing so in the name of research, as a part of research participation, so I'll be clear about that. It's almost fulfilling their last wishes in their research participation. That leads to a second piece of legacy building, if you will, or carrying themselves forward. Also that brings along the familial piece, the family. Because as I go forward, then I usher in the health of my family forward all through this brain donation act. So I see it in that threefold way or three-step way.

Chin: When you looked at your research center's brain donor program, you determined both brain donation consent and the actual what they call brain procurement. In doing so, you identified some important findings, particularly when looking at black African-American participants and Hispanic-Latino participants. Can you share with us what you found and how you interpreted that information?

Glover: Something that really stands out to me or stood out to me is the role of family. How it can be both a barrier, so to speak, and a facilitator. When I say barrier, it just means for people who have said no to brain donation. They have not officially decided to sign the Uniform Anatomical Gift Act. That's what we use at the Rush Alzheimer's Disease Center to determine brain donation consent, okay? So it's an official document. Also, you have family for people who've said, yes, I've signed this consent form. I want to do this. So family serving as a more of a stop is people, well, they're just not on board. They wouldn't agree with this, or it really would make them sad once I pass away to have to go through this process. But then on the flip side for people who've said yes or agreed, consented, is that I'm doing this for my family. I want to not have others, especially among older Latinos, I do not want my family to experience the sadness that comes with this disease. But for, say, on the other side, older Black adults, it's really, I see this as an obligation for me to give back to my family and community as they situate themselves as a family member, so what was most interesting is that bifurcation of family is both what we call barrier and as facilitator. Kind of cool there.

Chin: It's such a complex family dynamic in general. When disease is present, of course, that makes it even more complex. But even now with donation. How the relationship is involved in this idea of consenting and actually finally donating your brain. Did you see different rates, though, at your center when it comes to Black participants, Latino participants, and then White participants?

Glover: Both Black and Latino participants say yes at a lower rate than non-Latino White participants. It's really a big gap in terms of procurement for older Black and Latino adults compared to older White adults. So that's just something we see not just at my center, but across the field overall.

Chin: There's two points, and I think that's important. That's something I learned from your presentation. It isn't enough to have a consent, right? That's certainly a number that people think of. But then it's everything that's involved in staying engaged, and ultimately, when a person passes away, having that donation actually occur. So I imagine then from a research perspective, you're looking at two different processes or multiple processes, and they're different, so it's almost like two different investigations itself, right?

Glover: Yes. But they're intertwined, because you have of course leading up to consent to agreeing to brain donation once you pass away, but you know you can't bring yourself in for autopsy once you pass away that has to be a family member or someone else. Usually, it is a loved one, so we'll say loved one versus a heart-poor family but it is a loved one that has to bring you in. Even if someone, an older Black adult or older Latino person, says yes, we're still relying upon this loved one to say, okay, once this person passes away, I'm going to alert the RADC or the funeral home that we're working with, go about that process, and then fully realize all the way to brain autopsy, because consent is different than autopsy. Because I can consent, but once I pass, that's that, and then someone else has to pick that up to get me in contact with the Rush Alzheimer's Disease Center staff and have that autopsy completed.

Chin: Yet another relationship between research and not the study participant, but the people who matter to the study participant.

Glover: That's right. So something through this work that I've been pushing for has been family as participant. Of course, with the agreement of the person, of the participant, OK, we're not going to contact a family member without their consent or their knowledge. But I think even throughout the life trajectory of the research process. Say from this is what brain donation is, and then this is how research participation overall relates to that, should be a family process, or the family should be involved. So by the time we get to discussing brain donation, what it entails, how it may address ADRD, and then we can start speaking about autopsy. How it will not interrupt your grieving process or your burial plans or internment plans, and then the timeline for that. That gives them more security as, okay, this is what it is. This is what it addresses in terms of research and ADRD, but also logistically, this is what it will not serve as a hindrance once my loved one passes away, because no one wants to deal with extra tasks or something triggering them or any trauma during this immediate planning after a loved one passes away.

Chin: You've been asking critical questions when it comes to brain donation. Now, specifically, why do people consent to brain donation? And as you said it, what barriers exist in consenting and the actual procurement? Now, your study to investigate these types of questions is called the HEARD study. H-E-A-R-D. Very clever. Can you describe the study for our listeners?

Glover: Yeah, so when I first started thinking about brain donation, I of course took my own advice and I surveyed what has been done, you know. Who has come before and what are some of the gaps. So I wanted to understand why are we seeing lower rates of consent, but also autopsy among three big groups. That is older Whites, the lower socioeconomic status, income in particular, older Black adults and older Latinos. Really thinking through what leads to, for now, saying no or not saying yes to brain donation? Those are persons that are really interested in the barriers. What are the reasons that they have not consented or have declined brain donation consent? And then among people who've said yes, why did you say yes? Why have you consented to this? Because there are some elements they may describe that we can mimic or facilitate in people that have not agreed to brain donation just yet. So I wanted to see those two sides among those three groups. It was really a three-by-two design with the demographic group by two: “yes”, “no”, just understand what are the pathways to consent or declining brain donation, so really digging deeper into the consent piece, but then second among the folks who have said yes, what do they think or what do they perceive are the impediments to complete a brain autopsy once they pass away? Because we can't just stop there, and we only have perceptions at this part because they're still alive and with us, which is great. I wanted to understand those big sets of factors. That was the qualitative piece. I must go back and say this, HEARD study was a two-phase, sequential, mixed methods research study. That means that the first phase informs the second phase. Qualitative was first. So I really wanted to understand these rich, full perspectives from these different groups, these three different demographic groups, on why they've said yes or no to brain donation as it stands. But then also moving into the quantitative piece, having a fuller explanation of the factors that go into brain donation decision-making. Because it's not just about income or race or ethnicity, it's so much more, and we have those data at the Rush Alzheimer's Disease Center. So saying, what else goes into it from a larger sample, more factors, and then we'll wind up with a survey to really put it out to not just the RADC, but it's my hope, across all Alzheimer's disease research centers to say, okay, beyond race, ethnicity, income status, what else goes into your decision-making for brain donation? People who are participants and haven't decided yet or said no, and people who may be research participants and their family members.

Chin: There's a lot of richness to this study, and it's very inclusive because you're asking everybody who's a part of it, whether they said yes or no. So what barriers did you find to brain donation and did they differ among the groups of individuals that you were looking at?

Glover: So qualitatively at this point, that's the part that is completed and I published on. One of the big barriers to saying no or declining brain donation was simply exposure and information. What I mean by that is not really having a grasp of okay, what is brain donation? How does it relate to the research that we are conducting? And what will it do for my family? Or what will it do for the field going forward? So they really needed information on two big pieces. The purpose of brain donation, what use does it serve, how it relates to research, but also how do we go about it? What does this consent mean? What does autopsy mean? And what does it mean for my family while I'm alive? But also more importantly, once I pass away. So that was a huge barrier. But conversely, we saw folks that have signed this Uniform Anatomical Gift Act. It was all about family in terms of, I want to do this for family members. So it's almost serving as a form of altruism. But then this is where things got tricky, because they said, well, I made this decision for my family, but my family may not necessarily agree with this decision, so we think that may serve as an impediment, especially among older Black adults, because they were making this decision very autonomously, independently, for family, but not necessarily in conjunction with or approval from family. That was unique. That was kind of interesting thing, right? But older Latinos, they were conferring with their family members and making decision to benefit them. So their family's like, okay, this works for me, and the participant is like, I'm doing this for you and our culture going forward. But what trips up on that end, so this is where, when the autopsy comes into play. So I would say for older Black adults, they will say, well, my family, I'm doing it for them. But since they're not on board, they may not follow through with my wishes. It's because of the buy-in, the lack of buy-in at the consent process that you may not have the follow-through. However, for older Latinos, we were seeing, well, I've bought in, my family's bought in while I'm consenting, while I'm alive, but they may not follow through because of the grieving process. They may be so distraught that they forget to contact the Rush Alzheimer's Disease Center that they simply may not do it because they don't want to deal with that, or they may not accept that their loved one has passed away. So it's really buy-in by family and follow-through by family, even among people who have consented. That's huge. It really loops back to the family as participant to one, reassure this is what we mean by brain donation in relationship to research participation, and this is what the process of autopsy means or looks like once your loved one passes away. So it really is so many moving parts among this big block issue of brain donation for research.

Chin: It's so amazing the intricacies of this process, this one singular process as it relates to families and different cultures. Of course, education is something researchers and institutions can do. We can provide that. We can do it better, obviously, through research like yours. But it's also it can't be algorithmic, and it has to be able to to accommodate for a person's culture, their family dynamics and being aware of those things as you then go forward. Maybe after consent, still trying to understand what is needed by the family and the participants, so it's it's very interesting. I imagine you have some very rich conversations with with your participants during this. Well, those are sort of the barriers that we discussed. What about the facilitators to brain donation?

Glover: With family, of course, in the future, so being focused on that. People are saying yes or consenting to brain donation really due to that the family focused on the future altruism but then also wanting to see themselves live forward through this choice in terms of impacting research on ADRD. They see themselves as active folks. They are active people. Especially those who have consented to brain donation, really most of the participants at the Rush Alzheimer's Disease Center. When I say active, they're like cognitively engaged, socially active, still figuring out how to be physically active, whether it's gardening, walking, all sorts of things, but they see research as a form of activity, especially those who have said yes, so they're fulfilling that research activity really through brain donation, but also fulfilling their obligation, their commitment to family and community through saying, I want to eradicate this disease or suite of diseases. I don't want anyone else in my family to go through this or experience it, so I want to donate my brain. So it's also fulfilling activity and acquisition of knowledge by donating their brain, but also really easing the road for their family and further their broader community through brain donation.

Chin: Going to that next step, what are the common impediments to the actual brain autopsy then? And did those differ again among the different groups that you were looking at?

Glover: For older Whites with lower income, it was really understanding the processes. So even though they've said yes, they're still a little murky on, okay, what exactly happens once I pass away? Who does my loved one call? What's the timeframe of this? I'm uncertain of this. If I'm uncertain, I can't explain it to my loved one well, then they are uncertain, so they're less likely to follow through. These are the perceptions. But then for older Black and Latino adults, it's family, but it's two different issues, so two different roads. For older Black adults, it's, well, I didn't really have family buy-in when I consented, so they may say, forget this, I'm not doing this, or I don't agree with this. But for older Latinos, it's, I've had family buy-in, but we may not have family follow-through due to that grieving process. That's where older Black and Latinos overlap, where the family member may not follow through for various reasons, whether they do not agree with consenting to brain donation or the grieving process simply stops. It's two roads of family. One is lack of buy-in at the onset, especially for older Black adults. I don't agree with this decision, therefore I will not fulfill it. But for older Latinos being I do agree with this, I'm okay with this, but I may be so caught up in the grieving process that I may not follow through. So that's where older Black and Latino adults overlap, that there's just no follow through potentially from their family and loved ones.

Chin: What's so fascinating about your mixed methods research is if you just looked at the number, you would say, oh, these two groups of individuals both don't have this percentage of follow through. But you wouldn't understand why that is. In essence, you'd be making this assumption it's probably the same reason or a collection of reasons, but it's only through talking to people that you're able to see, well, there's some similarities, but there's actually some differences and we need to account for that and somehow be able to provide that education or connection and help people make the decision that best suits them and their families. But we wouldn't know that without actually doing a qualitative study.

Glover: I agree. You know, as a mixed methodologist, I always say you can't have a whole person without quant and qual. What I mean by that is that quantitative research, that's the bone, you know, the skeleton of a person or their perspective, their lived experience, but qualitative, fat and muscle, you know, and together they create this full store because looking at the numbers, you would just say, okay, you know, older Black adults, older Latinos, they're not saying yes or consenting to brain donation at such rates as older Whites, and also we're not seeing them follow through a complete autopsy. But that's very halfway understanding of what exactly we're talking about. That's quantitative. But qualitatively, we will know that one of the big things is family. Can be both barrier and facilitator. How then do we strategize to say, getting more of these individuals to understand brain donation and research, autopsy furthermore, and then say, how do we get family involved, to say address not only on our end say as impediment or barrier, but really to inform and partner and co-design our research with participants, community members, and their loved ones. So it's really beyond brain donation and brain autopsy to think through how do we really address these sensitive, nuanced topics in aging really by using mixed methods research to say, okay, this is what we have crudely, quantitatively, but how do we fill this out? Have a fuller understanding of the persons that we're working with to really enact equity in our field. So that's how I see it, you know, that process.

Chin: That leads right to my next question, is knowing these things, what do researchers, research programs that we work with in our ADRC network? What do we do to, yes, improve rates, but ultimately, what do we do to make sure that we're doing the right things for our participants?

Glover: Well, one, I think we have to know the richness of the work that has come before us. and then also of our colleagues around us. So knowing what's come before and what's existing, then we can say, how do we build from it or do we expand it? But then also we need to have that respect, collaboration, and then really strategizing with our colleagues across disciplines, but all within the field of aging and ADRD to say, what is the pathway forward? This is what we've done. This is what we're doing and what are next steps coming from our different expertise vantage points. If we get on that page, I think it's easier to say, all right, there's common grounds in terms of we want to enact equity. We want to facilitate healthy aging, decrease chronic diseases of aging, and this is how we can do this together, but also independently in terms of our expertise.

Chin: I also like your idea of working with our participants in figuring out the best process that works for them and actually getting their input as to, “No, don't do it this way, or actually, we don't mind the phone call if you do it this way.”

Glover: Definitely, because these are people with perspectives and experience. These older adults that we're working with, they've lived a full life. They have thoughts on how things can be done, improved upon, and just by being in dialogue with them and really thinking through something that we use also at the Rush Alzheimer's Disease Center is design thinking, where we go in, and that's a methodology, where we go in and we think of how can we co-design? How can we co-strategize to really address these big challenges in our field? all the way through the research process from developing a question. How can we build our methods? The measures that we use. How do we interpret our results? And how do we give back and then circle to say, these are the results that we're finding? Does this make sense? Does this fit with your lived experience? And what can we do next? Because it's not us funneling information at folks. These are people that can communicate back and then give key feedback to say, these are ways that we can improve or at least firm up the clarity and communication and thus the research process.

Chin: When you talk about feedback, one of my questions for you and for maybe other researchers listening then, what are some of the common questions asked by participants or families? What are things that you are hearing when it comes to that sort of education gap? What can other people be doing right now?

Glover: Yeah, let me think. Really, well, what is brain donation? Why are you asking me this? How can brain donation benefit or really complement my research participation? What does brain donation mean to the overall field of aging and ADRD? And what are you going to do with this information? Once you procure the brain, you have the autopsy, what next? So what is brain donation in relationship to research? Then how does it really benefit the overall field? What's the process of donating my brain? So consent, what's the process of autopsy? Folks have asked, may I see an autopsy? At least a simulation as such, or even can you map it out, say in visual form. What this looks like for me and my family? And then tell me what you're going to do afterwards. So it's something that I recently published on in relationship to PET scan, and that's the PPO – What's the purpose, what's the process, and what's the outcome? Folks are really interested in those three pieces, even beyond PET, of course, but relatedly to brain donation.

Chin: And now Rush. You and Rush have done a lot to implement change in reaching out and engaging with the participants, and you do it in a very culturally respectful way. So I'm wondering if you can share with us just some of the strategies that you guys have implemented there that have really, you've gotten good feedback from your participants.

Glover: So we try, you know, we try our best. I can't say that, but always room to grow. The first is really providing a packet on that the information pieces that I just highlighted, the PPO – What's the purpose of brain donation? What's the process of consenting and subsequent autopsy? And what's the outcome? Both in terms of your family, you, and then the field? So having that information readily available to the person, but also, hey, is it OK if we talk to your family member? Would you like for us to give a packet to your family member or loved one so they can understand it too or read more about it and ask questions? But one of the big things is we know this is not just a one time thing. Whether a person says yes or consents to brain donation, that won't be the only time we bring this up. We're going to address that packet throughout the process of you being a participant, and if you say no, we'll still just ask, hey, would you like to talk about brain donation? If it's a hard no, we back up. There's no pushing this issue or this subject on anyone. But if they're like, well, I'm sort of lukewarm in this, meaning maybe come back in six months and bring it up? Sure, we'll do just that. But for people who've said yes or consented, we then say, can we ask for a funeral home that you may want to partner with once you pass away? Can we ask for that name? If they say yes, then we let the funeral home know. Look, we're having someone who is an RADC, a Rush Alzheimer's Disease Center participant, They have agreed to this via the Uniform Anatomical Gift Act. Can we partner with you on making this as seamless as possible? Once the person passes away, we'll work with you and the loved ones to say, can we procure the body, perform the autopsy, and return your loved ones remains in a respectful manner, quickly, in a way that they will have no physical inkling that an autopsy has occurred.

Chin: I'd like to end by asking you sort of a tough question. What would you say to other research programs that might argue, well, that worked for Rush, but we live in a different part of the country. We have different participant communities. Does this translate to what we are trying to do here?

Glover: Oh, that is a good one, Dr. Chen. I will say that if someone were to ask me that, say, at a meeting, I would say, you're probably right. It may not directly translate. This is what is occurring at the Rush Alzheimer's Disease Center. That is why the plan is to expand this out to other Alzheimer's disease research centers. But I will follow up and say, this gives you a template. This shows you where we can start. This is a foundation. We have to start somewhere. So what you can do is use this work, this research, and say, all right, let's start co-strategizing, co-designing with communities that we do work with. What works? What doesn't work? And then you can tailor as you see fit, and then you can go further to create and expand from this work. So it gives you at least a foundation of which methodologies, so say mixed methods research that can work. These are strategies that we are using that you can tailor or augment. But then please share as to how does this look like for your center and the communities in which you serve? So nothing is a one-stop shop and we're always evolving. That's why I always stress saying what has been done before and what is taking place now, and it is my hope that others will add to that and then take it further because they may set forth something that I'm like, why didn't we think of that? Let me bring this back to the RADC, the communities we serve and research participants and see how can we expand so it's ever-evolving. So I will say that one, you're probably right. Two, this is a foundation. Please tailor, create and expand as you see fit, and then let us know what you find, please.

Chin: Well, that was supposed to be a tough question, but it seemed pretty easy to you, Dr. Glover. That's why you're one of the leaders in this field. So I want to thank you for that answer and thank you for your time and for being on Dementia Matters today.

Glover: Thank you, Dr. Chin. This has been fun.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Taylor Eberhardt. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.