Transcript 37

 

 

Speaker 1 [00:00:00] Welcome to another news series on dementia dialog and which we will follow. Host dance Dench Cole in his exploration of the experience of members of the two US LGBTQ community with dementia and there's first of four episodes. Our sketches are some of the issues with Drs. Jason Flat and Ashley Flanagan and Celeste Payne. After listening to Jason and ARN, we will be introduced to Celeste and Ashley, who will talk with Darren about their action research project now underway. Let's listen in.

 

Speaker 2 [00:00:41] Our first guest is Dr. Jason Flat. Jason is an assistant professor in the Social and behavioral health program at the University of Nevada Las Vegas School of Public Health. Jason is working to better understand the risk and protective factors for Alzheimer's disease and related dementias among LGBTQ to people. He has an ongoing research grant from the National Institute on Aging in the US and looking at the epidemiology of Alzheimer's disease and related dementias in sexual and gender minority older adults. Jason, welcome to dementia dialog.

 

Speaker 3 [00:01:13] Thank you so much. I'm excited to be here.

 

Speaker 2 [00:01:17] To start, I'd like to get a sense of what got you interested in dementia among the LGBTQ people?

 

Speaker 3 [00:01:22] Yeah. Well, it's a sort of I have a personal connection, not an LGBTQ member. But when I was first in graduate school working on my Ph.D., my grandmother started having some pretty severe cognitive issues. So she was having issues with like memory and recall. She would even forget that I had called her recently, so I started getting really interested in that. And it wasn't. I did a lot of service work during my PhD training where I was doing a friendly visitor program, and I would go meet with an LGBTQ plus senior in their home and spend some time with them and just learn about them. And I got really interested in how, as a gay man, how could I use some of my experiences and knowledge and research to help the community? So I moved to San Francisco with my husband, and that was a really unique opportunity. I wanted to learn more about like the needs of the aging LGBTQ two community in San Francisco. And so I did some really unique time where I spent like an hour and a half with seniors in San Francisco interviewing them about their life, their health, their concerns with dementia. From that work, I just realized there was a huge gap and a need to support LGBTQ to people as they get older. And that really is what's been driving me and doing the work since.

 

Speaker 2 [00:03:03] It's really interesting, can you tell us a little bit about some of those concerns that you heard from folks during those interviews? Yeah.

 

Speaker 3 [00:03:10] So a lot of the concerns are were really around either knowing they had a family history. Right. So they're like, Oh, my mother or sister developed dementia. And so they were concerned raid. Is there some type of hereditary risk for them? The other piece I learned was most of this, I think almost like 90 percent of the people that I interviewed were living alone, right? So that was a huge concern for them around even end of life planning. But caregiving? Like, how are they going to if they did develop dementia? The big concern was like, how am I going to maintain my life? I don't want to go into an institutional setting. That was a big concern. So we were just really trying to, you know, learn about what are some of the strategies they're using and what kind of services in the community might they be able to access? A lot of it was socially oriented. Food insecurity is a big issue as well as income, right? Everyone's Strachan. And we know that Alzheimer's disease is one of the most expensive diseases to manage right. And so that was a huge concern as well.

 

Speaker 2 [00:04:33] When I talk about LGBTQ, older people in the community, they often ask me about risk and are they at an increased risk? What does the research tell us?

 

Speaker 3 [00:04:42] Yeah, so I have some unique research that's coming out. The first one, it was just published today in the Alzheimer's and Dementia Journal. It's focused on subjective cognitive decline in LGBTQ plus people. And so we use data it's from twenty fifteen through twenty eighteen in the US. The CDC every year does an annual survey where they assess sort of population health. And in this, they were asking people that were age forty five and older about their concerns with their memory and thinking. So specifically, they asked people if their memory or thinking was getting worse or they noticed more problems in the past year. And what we found was that LGBTQ people that were forty five plus were more likely to report that they were having problems with their memory and thinking compared to non LGBTQ people. And what added to that is they also said that the the memory and thinking problems they were having was also more likely to interfere in their daily lives. So it impacted their ability to work to do household tasks right, but even to go and see other people. And it was much higher. Nearly like 60 percent of the LGBTQ people with the memory challenges reported that it impacted their daily life compared to less than 50 percent of the non LGBTQ.

 

Speaker 2 [00:06:22] Yeah, that's interesting. So is the thinking then the subjective cognitive decline is an indicator, maybe for future dementia risk.

 

Speaker 3 [00:06:30] It might be, yeah, so subjective cognitive decline can be one of the first kind of signs of potential dementia, but it also could be other reasons memory can be impacted by things like depression. They could also be impacted if you had like an infection or some kind of health condition. But then also it could be the signs of dementia that are impacting your memory and thinking. So that's why we're concerned. And then even more so is because it's impacting their daily lives. More so that's suggesting perhaps it's more severe.

 

Speaker 2 [00:07:09] I'm wondering about the available data on the number of folks with dementia who identify as LGBTQ. Do do we have a sense of the prevalence of dementia within our communities?

 

Speaker 3 [00:07:21] Not really, especially here in the US in the past, couple of you know, the past four years we saw with the administration being led by Republicans, a lot of removal of collection of sexual orientation and gender identity from our national surveys. And then even the surveys that we do have that collect about people's LGBTQ plus identity. They make it optional or some groups can opt to not ask the question. So it makes it very difficult for us to assess. I'm using data from Northern California. It's Kaiser Permanente, a health system that provides integrated care and sort of tracks all the types of care and diagnoses that people receive. So we are using that data and following people for nearly 10 years to look at their risk of developing dementia. What we're finding right now, and it's important to realize Northern California is a very different place than most places in the US. So a lot of, you know, better social support structures that are much more focused on helping people and providing resources, as well as some of the more progressive political atmosphere in Northern California. So we didn't find among this group really differences in dementia risk. It was for both around like 10 percent risk of developing dementia for LGBTQ and non LGBTQ. But what we did find that was interesting was a younger age of diagnosis for LGBT people. So it was nearly two years earlier that they had a diagnosis. So right there showing you there is a potential concern in that people may get a diagnosis of dementia earlier in the LGBT community. We need more research to understand like, is this a trend that we would see nationally? One really interesting study that came out was back in 2016. There was a study by Christina Dragon that looked at Medicare data from the Center for Medicaid and Medicare Services here in the US. And what they found that was unique was looking at transgender people. But when they looked at their medical record data, they found more diagnoses of dementia for trans people at around 18 percent, compared to 12 percent for non trans people. Right. So a six percent increase that's concerning as well in terms of current trends, but we need more data. That's the big piece that we're advocating for as we have to ask people about their gender identity, their sex assigned at birth, as well as asking about sexual orientation because we know that LGBTQ people face. Right. Health disparities they're more likely to experience chronic conditions than many of their non LGBTQ counterparts. And then we also see a lot of concerns around mental health, and we really have been linking this to the historical and current experiences of discrimination over their lifetime. So that's really why we think that we're seeing these health disparities, which then many of them are risk factors for dementia.

 

Speaker 2 [00:11:16] When I talk to clinicians and other researchers, sometimes there's some hesitation to ask about sexual orientation and gender identity. What would you say to those folks?

 

Speaker 3 [00:11:27] Well, I think the big pieces that LGBTQ plus people are not going to be offended, if you ask. So that's the first part in order to make care inclusive for everybody. Right? It's important that we ask people about their identities, their backgrounds and and make care inclusive, right? Knowing that if you asked me about my identity and I feel comfortable sharing, there's potential that right, you're going to build better rapport and trust with me and then my care experience. But also your ability to meet my needs are going to be improved. We've got to collect it if you don't. Ask then, you can't help, right, and you also will likely lose clients or customers because right, we want to go somewhere where we're valued and respected.

 

Speaker 2 [00:12:21] So I think that respect is such a big thing. Is there anything else that you would recommend in terms of how to best support LGBTQ to persons with dementia and their caregivers?

 

Speaker 3 [00:12:32] Yeah. Well, I think the last piece is really around caregiving. So much like I said, where the community often is isolated, well, this doesn't end when you become a caregiver. Right. And even though you're caring for someone else and trying to help coordinate care and keep them in their home and make sure their needs are met, often it can be a really lonely experience. And caregivers experience discrimination, as well as fear that the person they're caring for will experience discrimination when they go to access services. So we need to do a lot more also to make sure right until we find a cure for dementia, we need to be making sure we're equipping caregivers with the support they need. People living with dementia, the support that they need and really changing the way our systems work with older people, but especially LGBTQ plus people. This is just going to become more of an issue as we see the shift in our population getting older and older. Right. And so if we don't have plans in place to help people that are caregiving, I know the Alzheimer's Association puts out like it's like something like billions of dollars of unpaid care that caregivers provide. And we know that those burdens lead to health problems for caregivers who might even develop dementia. So we need to really bolster services for caregivers and especially LGBTQ caregivers.

 

Speaker 2 [00:14:14] Jason, I appreciate you being with us today, thank you.

 

Speaker 3 [00:14:17] Yeah, my pleasure.

 

Speaker 2 [00:14:23] Our next guests are working on a research project focused on two LGBTQ AI persons living with dementia and their unpaid carers in Canada. Ashley Flanagan is a research fellow in diversity and aging at the National Institute on Aging in Toronto. Actually, the research focuses on two LGBTQ persons and aging, with the goal of advancing comprehensive health and wellness policy programs and services for older adults with diverse gender and sexual identities. Celeste Payne is a socio cultural and medical anthropologist and holds a research appointment as a senior research officer to assess LGBTQ health, aging and housing at a global Canada. Gail is a leading national organization for LGBTQ people and issues, so less work aims to advance critical conversations about aging, care, disability and gender and gender nonconformity in later life. I'd like to welcome you both to the podcast to start. I'm really excited to learn about your research project, but before we get there, I'd like to get a sense of what led to this research project.

 

Speaker 4 [00:15:29] The Lutely. So this research project was an outgrowth of ongoing research, advocacy and education work at a gal. Canada focused on two US LGBTQ AI aging issues. So it grew out of an interest in how we can better support and build that foundational knowledge about how to better support the communities that we serve. It is a multi-faith project for which the research is the foundation and to do the research. Aggarwal partnered with the National Institute on Aging and Financially and myself are leading the research.

 

Speaker 2 [00:16:11] Can you tell us a little bit more about the project? Some of the methods, what you're hoping to find.

 

Speaker 5 [00:16:15] Our approach to this project is two phases. The first phase we recruited folks to participate in focus groups, which happened online. So we had we ran focus groups with two as LGBTQ folks living with dementia. And then we had separate and simultaneous focus groups with unpaid carers of folks who are two US LGBTQ and living with dementia. So we will necessarily have to be a caregiver or caring dyad. We had folks who came to the project who had passed caregiving experience and also people who are in the thick of it at the moment. So we have that the focus groups they wrapped up in the spring are in the middle of analysis with those. And then coming up, we have a consultation event where we're going to bring together the participants from the focus groups and also stakeholders in dementia care into us, LGBTQ aging and together into the same space to kind of brainstorm and think of ways that we can take what we found in our focus groups and move it forward. And what we can do to kind of reach the most people and have the most impact that we can know.

 

Speaker 2 [00:17:32] You're in the middle of data analysis. Can you share a little bit about what you're hearing from folks? What are some of their concerns or some of their challenges?

 

Speaker 4 [00:17:39] So one key finding thus far that's come through quite clearly is that for carers of choice, LGBTQ people living with dementia, they come to this care work and engagement from various pathways. So we met with people who were caring for siblings, caring for and caring for spouses, as well as people who had been brought into this orbit of care for community members or people who had previously been more distant friends. So the importance of community of different forms of queer kinship in supporting people through their journeys with dementia is definitely one of the most striking striking findings thus far.

 

Speaker 5 [00:18:27] Mhm. And then in addition to that kind of the orbit of care, folks that are kind of immersed in it talked about being quite isolating and then talked about the focus groups as this first opportunity that they had to share their experiences and hear about experiences from folks who are also caring with and for to us LGBTQ people with living with dementia and also talking to someone else who is also walking the journey of living with dementia as someone who is two or three LGBTQ II. So having that focus group experience kind of really turned into those really powerful conversation between people and the offering of support. And what came out of that is kind of this really intense desire for ongoing conversations and whether it's a support group or whether it's organizations kind of pick up that call. And provide these spaces for folks to come together and share that kind of outside of whether it's dementia specific group or to us LGBTQ aging group, but having this really intersectional space for people to share.

 

Speaker 2 [00:19:39] When I talk to folks in the community, sometimes I hear that the perception that dementia is the same for majority folks as it might be for a minority for, say, queer people. But what do you say to that?

 

Speaker 4 [00:19:53] I think from the conversations that we had there, certainly many similarities and also key differences. In one sense, with dementia comes a lot of change for people themselves, for those in their lives. One particularity with today's LGBTQ community is we have been finding and have each found in prior work. Are these transformations around? And if gender expression also transformations around sexual identity and relationships, even within couples comes home in particular ways, this can be brought to the fore when people are interacting with care systems and worried about whether their relationships will be recognized when they're seeking to enter different kinds of dementia support spaces and even their close. Others are not recognizing them in the same ways. There is particularity to that that is, I think, distinct than than, say, a heteronormative couple. Form of of people going through this journey. And is there any other

 

Speaker 5 [00:21:10] I think you really nailed it there. Yeah, just that sense of whether it's kind of this feeling of an erasure of a relationship. So we've had folks talk about and that is exactly what Fleischer said, but that there's this sense when you're interacting in a support space and people make assumptions about your relationship that try and fit you within kind of this very heteronormative relationship framework, either. Sister or sibling or parent or a parental relationship, if there is if there is an age gap in the relationship, that kind of erases the the actual relationship in a way that tries to fit the relationship into this kind of heteronormative space that leaves people feeling and being and unheard and not as supported as they had hoped. Kind of coming into that faith,

 

Speaker 4 [00:22:08] you know, to us, LGBTQ folks have by necessity and through creativity, informed many different kinds of relationships over life and have also had to provide care in very challenging circumstances in the past, for example, around HIV. And people are definitely bringing a lot of their expertize, their skills, their lived and embodied knowledge towards what it means and what it can look like, who experienced dementia rather either as the person themselves or those around them. So I think there is. Also not necessarily unique, but particular creativity and resourcefulness that are our communities have been sharing with us.

 

Speaker 2 [00:22:59] I'm wondering if there are little pieces of sort of positivity that you might be able to kind of bring out of those of those findings that might come to mind right now?

 

Speaker 4 [00:23:08] It's definitely and I don't know if you would call this a positive, but among some of the participants who are more proactive and advocacy type initiatives or in sharing knowledge about living with and caring for a person living with dementia. There's some space of opportunity has been provided. To share and to be placed in that position of someone with knowledge, with some capacity. To mentor. Definitely desire to mentor. If those places aren't open. So my take on that question is we definitely identified a lot of notes of potential, but there really needs to be more social and structural support for. Or these notes of potential in what occurs to really be tapped into and and to be supported, you know, for the betterment of everyone involved.

 

Speaker 2 [00:24:18] Wondering, based on the research findings, opportunity, if you can speak a little bit to some of the opportunities for change, either within formalized systems of care or informal systems that exist within the community.

 

Speaker 5 [00:24:33] One of the biggest things that folks were talking about and it and it came through time and time again and the focus groups was this idea about long term care and that people are thinking forward to the future of when they may not be able to support themselves or support their loved ones in that relationship? And what kind of that greater level of assistance will look like, whether it's a long term care home or whether it's home care or whether it's some sort of assisted living and having conversations about what their needs are around that. And I think that's what coming out of those conversations and moving forward is this need for more education, more advocacy around lived experiences of folks who are to us LGBTQ AI and on a more broad level and and working with folks who are providing care to provide it in a way that is is the most appropriate, is the most affirming and recognizes lived experiences that people are bringing with them into care. Context, I think, is kind of one of the is a big one that folks were talking about. If we're thinking more long term into entered into that care relationship there.

 

Speaker 4 [00:25:51] Yeah, I would also emphasized that the project is focused specifically on unpaid carers on that end of caregiving and definitely what came through. Not so much in explicit statements, but in what we can interpret and think through as analysts and researchers is the very strong need for greater support for carers in general. If this is caregiving, leave is if this is more home care support, more support services, perhaps form of respite care. This is certainly not unique to us LGBTQ communities, but it is certainly certainly called for certainly a desired and there's definitely a need.

 

Speaker 2 [00:26:35] I'm just wondering if you came across any promising resources that exist in Canada, in Canada or best practices that we might be able to point folks to should should they be interested in more support.

 

Speaker 5 [00:26:51] Right now, there seems to be a lot of work being done in this area, but I think in the future there will be a lot or a lot more, I should say our resources out there for folks. But as it stands right now, we didn't find anything that people could turn to in this moment who are living in community. There are a number of resources out there and are being developed also for a kind of long term care. More more paid, more paid support and supporting folks in that way. But in terms of kind of that unpaid aspect, not so much at the moment.

 

Speaker 4 [00:27:32] And definitely, this was part of the impetus of this project to begin with was this enormous gap. There seems to be an energy and a lot in the works in the future. For example, this research will inform some modules that we will develop also along the way. We've been trying very hard as the researchers to make connections that makes sense. In terms of an end goal, you know, this kind of research with communities who are precariously positioned, who have historically and continue to have very fraught relationships with health care systems with different social institutions. Our aim is not to create yet another population to figure out how to intervene in, but to learn what people are seeking and what they need to be supported on terms that are more their own.

 

Speaker 2 [00:28:33] I want to thank both of you for taking the time to share your work with me and and with our listeners. I've learned a lot. Thanks.

 

Speaker 4 [00:28:41] Thank you.

 

Speaker 1 [00:28:42] Thank you. Thanks to Jason, Celeste and Ashley and of course, arm for scoping out some of the issues in our upcoming episodes. I think it is fair to say that COVID 19 has heightened our collective awareness of how different economic, social and cultural factors affect a person's health. This awareness is beginning to influence our thinking in various fields, including dementia, such as this life as a two as LGBTQ person place one at greater risk than being in the dominant community or our services equally available to them. Since we are interweaving our arts and to as LGBTQ, our series, our next focus or feature co-host Cynthia Huling Hummel joining Liesl while still on the subject of dementia and the expressive arts. Please join us. We want to hear from you, our listeners, about how we can improve our podcast, make it more accessible to people and reach more listeners to do this. We're hosting three separate focus groups in November. Please consider joining one of them. The groups will be professionally facilitated and will last no longer than an hour. For more information, please write to Dementia Dot dialoged at Lakehead. You don't. We would love to hear from you. Thanks to the Center for Research and Education on Aging and Health at Lakehead University, our institutional partner into the Public Health Agency of Canada for its financial support. My name is David Harvey.