Rainbows of Caring with Dr. Joel G. Anderson, PhD

[00:00:02] What you want, when you want it, where you want it.

[00:00:06] This is The MESH.

[00:00:08] This episode of The Caregiver Community is sponsored by Pace at Home.

[00:00:13] During this uncertain time, Pace at Home is enrolling participants who wish to continue to remain at home.

[00:00:19] Partnering with families, Pace at Home provides caring medical support for all of our program's participants.

[00:00:26] Visit us on our website or give us a call at 828-468-3980 to talk with a representative that can discuss with you the Pace at Home all-inclusive medical approach.

[00:00:41] Pace at Home is the champion for seniors wishing to remain in their community.

[00:00:54] Welcome to The Caregiver Community.

[00:00:56] This is a place where we talk about the joys and the challenges of caring for our aging parents and loved ones, as well as caring for ourselves.

[00:01:06] I am Frances Hall, founder and executive director of ACAP, Adult Children of Aging Parents.

[00:01:12] In this podcast, we're talking about LGBTQIA plus caregiver experiences, the current state of caregiving in the United States, and future insights.

[00:01:24] I am delighted to be joined by Dr. Joel G. Anderson, Ph.D., who is a professor in the College of Nursing at the University of Tennessee, Knoxville,

[00:01:33] and adjunct associate professor at the Center for Age-Related Medicine in Stavanger, Norway.

[00:01:41] Dr. Anderson's research focuses on family quality of life in dementia and caregiving,

[00:01:46] including the use of digital health resources as part of the caregiving experience and the unique needs of the LGBTQIA plus caregivers and older adults.

[00:01:59] Joel has received funding from the National Institute on Aging, the Pat Summit Foundation, and the Kavli Foundation,

[00:02:05] and has published over 90 peer review articles.

[00:02:09] He also serves as a member of the editorial boards of the Journal of Family Nursing and Research in Gerontological Nursing,

[00:02:18] and is a fellow of the Gerontological Society of America.

[00:02:22] Wow, Joel, you are a busy person.

[00:02:26] Thank you so much for being with us.

[00:02:28] How are you today?

[00:02:30] I'm good, and it's my pleasure to be here.

[00:02:32] Thank you for the invitation.

[00:02:34] Absolutely.

[00:02:34] Thank you.

[00:02:35] Okay, so let's start at the beginning.

[00:02:38] How about describing the current state of caregiving for older adults in the United States?

[00:02:43] You do a lot of research, so I think you would have a pretty good handle on how this really is.

[00:02:50] Yeah, so I'm happy to talk about caregivers, always happy to talk about caregivers.

[00:02:55] There are about 20% of the U.S. population of adults are caring for another older adult,

[00:03:04] so that's about one in five people.

[00:03:07] And I really appreciate the quote from the late, great Rosalind Carter.

[00:03:12] I'll paraphrase that there are only four types of people in the world, those who are caregivers,

[00:03:16] those who have been, those who will be, and those who need one.

[00:03:19] And if you think about it at any point during our lives, we are one or more of those things.

[00:03:24] I think a lot of times when people hear the word caregiver, they still have a particular image in their mind.

[00:03:32] Usually they think, oh, the older woman who's caring for her husband, or the middle-aged, maybe older woman who's caring for a parent.

[00:03:41] And they're definitely caregivers.

[00:03:43] But we know, particularly the folks associated with ACAP, as well as researchers in caregiving, know that that's not the average caregiver.

[00:03:52] The average caregiver of the older adult in this country is under the age of 50.

[00:03:57] Most of them are working full-time or part-time.

[00:04:01] They may also be caring for children.

[00:04:04] And they may be caring from a distance.

[00:04:06] Now, that could be across the street, across town, or across the country.

[00:04:10] And that caregiving itself is not the typical thing.

[00:04:16] Again, there's, I think, an idea that people have of what caregiving is.

[00:04:20] When I'm out in the community and I'm talking to folks, they'll say things like,

[00:04:24] well, I'm not there yet.

[00:04:25] I'm not that old.

[00:04:26] You can be a caregiver at any age.

[00:04:28] Or, well, I'm not really a caregiver.

[00:04:30] I just go to the grocery store for my neighbor.

[00:04:34] Or, I help my mom with her banking.

[00:04:37] Or, I take my aunt to her medical appointments because she can't drive anymore.

[00:04:41] All of that's caregiving.

[00:04:43] It doesn't have to be some of the more heavier lifting things like bathing, dressing, feeding,

[00:04:52] helping someone get in and out of bed, helping someone go to the bathroom.

[00:04:55] It can be as simple as helping them manage their banking and their finances or helping them get to doctor's appointments

[00:05:02] because that's maybe a challenge right now.

[00:05:06] I think it's also important to consider that, as I said, the majority of caregivers in the U.S. are under the age of 50.

[00:05:12] Almost 10% of caregivers of older adults in the U.S. are in their 20s.

[00:05:17] And so, I don't think that we're thinking about, as a society and sometimes as organizations or as researchers or colleges,

[00:05:25] that younger folks are taking on caregiving roles more frequently

[00:05:30] and that they have different experiences and different expectations and different needs

[00:05:36] than maybe the typical caregiver did 10, 15 years ago.

[00:05:41] That's a really good point.

[00:05:44] Interestingly, we did, during COVID, we did a symposium that was online, this virtual symposium,

[00:05:55] but it literally was people across the country and in three different countries.

[00:06:03] But about 10% of the people were under the age, I can't remember the exact break off,

[00:06:12] but basically under the age of 25 that we had about 10%, whether they were the caregivers

[00:06:18] or whether they were professionals, we were not sure how to sort that out.

[00:06:24] But yes, and we have a chapter that is connected with the university

[00:06:29] and they are finding that a lot of their attendees are students.

[00:06:35] Absolutely.

[00:06:35] And also that sometimes those young people may not be what we consider the primary caregiver.

[00:06:42] They may be helping their parents care for a grandparent or another relative,

[00:06:46] but they're still part of the mix.

[00:06:48] Again, the typical idea sometimes is that one person is doing all of this.

[00:06:53] And sometimes one person is doing all of this.

[00:06:55] But a lot of times it takes a whole network of people.

[00:06:58] So there are primary, secondary, third string, fourth string.

[00:07:02] It really often takes a community of caregivers.

[00:07:06] And so more of my research colleagues, spoiler alert, are looking at caregiving networks

[00:07:11] and what does that look like?

[00:07:12] And what does that look like across different populations?

[00:07:16] I will definitely be interested in that research.

[00:07:21] And, you know, you really are talking about people who are caregivers in the definition of the word

[00:07:28] that don't consider themselves caregivers.

[00:07:31] And, you know, we try to limit in ACAP, we try to limit the use of the term caregiver

[00:07:41] just because so many people do not consider themselves caregivers.

[00:07:44] Absolutely.

[00:07:46] Absolutely.

[00:07:47] And so we find in our research and often use caregiver, care partner.

[00:07:52] Outside of the U.S., the word carer is often used more frequently.

[00:07:59] Friend, support.

[00:08:02] We try all different things to make sure that as much as possible, we're capturing the experiences

[00:08:08] of all the folks who are providing care, which is most often unpaid, though now sometimes people

[00:08:15] think, well, I'm getting a stipend from the state that I live in.

[00:08:18] So I'm a paid caregiver now, right?

[00:08:20] So I'm not an unpaid family caregiver.

[00:08:23] I'm not in that group anymore.

[00:08:25] So it's a diverse landscape.

[00:08:30] And I think that it's important to capture all of those experiences and the different ways in

[00:08:38] which people are providing care.

[00:08:39] And I'm grateful that my colleagues and I have the opportunity to do that.

[00:08:44] Absolutely.

[00:08:45] Absolutely.

[00:08:45] You know, and as extensive as the English language is, it is lacking in some areas.

[00:08:52] And this is one of them.

[00:08:53] Absolutely.

[00:08:54] Yeah.

[00:08:55] Yeah.

[00:08:56] Okay.

[00:08:56] So what are some of the physical, emotional, and mental health factors that are important

[00:09:02] to caregivers?

[00:09:03] What are you all finding?

[00:09:05] So we have a body of research that's been building for the last 30 or 40 years.

[00:09:11] It really started in the 80s and has been continuing to be built since then.

[00:09:18] Initially, there was a lot of focus on the, quote, negative aspects of caregiving.

[00:09:24] Caregiver burden, caregiver strain.

[00:09:26] So looking at things like emotional strain, physical strain, financial strain.

[00:09:31] And we do find that caregivers, depending on whom they're caring for, and my particular focus

[00:09:39] is on caregivers of people living with memory loss or dementia, that caregiving can be hard.

[00:09:44] It can be stressful.

[00:09:45] It can have a negative impact on physical health.

[00:09:49] A lot of times caregivers will put their own chronic disease management or physical health needs aside to focus on the person they're caring for.

[00:09:58] And that usually doesn't turn out well.

[00:10:02] The stress can also create emotional or mental health issues for the caregiver, either that they've had before.

[00:10:08] They may have a history of depression and that may come back, or it may develop something new.

[00:10:13] And there can be financial strain.

[00:10:16] We don't have a lot of great policy around caregiving in the U.S.

[00:10:25] We're trying.

[00:10:26] And so a lot of that financial burden falls on either the older adult who needs the care or on the family.

[00:10:32] And so there can be financial strain because sometimes you might need to make modifications to the home

[00:10:37] so the person can age in place for a longer period of time.

[00:10:41] And you didn't necessarily plan on putting in a ramp and how much it costs to put in a ramp and all of those things.

[00:10:47] So those are some of the things that we have seen for many years in caregiving.

[00:10:53] More recently, caregiving researchers have begun to focus on the positive aspects of caregiving.

[00:11:00] It's not all doom and gloom, and it's not all bad.

[00:11:03] A lot of times it strengthens relationships between the caregiver and the person that they're caring for.

[00:11:10] It can bring families closer together sometimes.

[00:11:13] It can give caregivers a sense of accomplishment or a sense of purpose that maybe they didn't have before.

[00:11:19] And so there's been more of a focus on those aspects of caregiving in the last few years,

[00:11:27] as well as not trying to put caregiver outcomes on a binary of positive and negative.

[00:11:34] And so looking at things of quality of life, resilience, caregiver mastery, self-efficacy,

[00:11:42] these types of things that just help support people in living well and supporting their well-being.

[00:11:48] We also know from research that, as you were saying earlier, the English language is very broad and very diverse.

[00:11:58] And sometimes we try to use the same words to mean different things and different words to mean the same things.

[00:12:05] And so, for example, for a long time, we talked about caregiver burden in research.

[00:12:09] And we found that in some caregiver communities, some different communities of individuals, they said, no, caregiving is not a burden.

[00:12:19] But if we asked them if it was hard, if it was sometimes stressful, or if they experienced strain, they'd say, oh, yeah.

[00:12:26] But it took us a while to figure out that in some cultures and some communities where there's strong filial piety or familial strength in their culture,

[00:12:40] caregiving is just what you do.

[00:12:43] As someone who comes from the Appalachian Mountains in the South, taking care of family is just something that you do.

[00:12:48] Caregiving is something that you do.

[00:12:50] So if you ask us if it's burdensome, we're going to say no.

[00:12:53] But if you ask us if it's hard, we might say yes.

[00:12:55] And so it all depends on how you ask the questions.

[00:12:58] And so over the last, definitely the last decade, maybe a little bit longer, we researchers have picked up on that.

[00:13:05] And we're asking, I think, better questions and more specific questions so that we can understand.

[00:13:10] Because if we just assume that when a caregiver tells us they don't have any burden, well, they're good.

[00:13:16] They don't need anything.

[00:13:17] They don't need ACAP.

[00:13:18] They don't need the Alzheimer's Association.

[00:13:19] They're good.

[00:13:20] We can go focus on the people who are telling us that they have problems.

[00:13:23] But we've not asked them the right question.

[00:13:27] That is really interesting.

[00:13:28] I would not have thought of it quite like that.

[00:13:33] But I do recognize that there are cultures.

[00:13:37] You know, we have a program about residential options.

[00:13:41] And, of course, one of the options is that mom or dad has reached a point and they need to be in assisted living or skilled care or memory care or whatever.

[00:13:50] But there are some cultures that say, oh, absolutely not.

[00:13:54] You know, this is what we do.

[00:13:57] This is what it means to be family or community.

[00:14:01] Absolutely.

[00:14:02] And one of the things that, again, spoiler alert, one of the things that my colleagues and I are working on right now, we have a grant from the National Institutes on Aging, to look at the surveys and the questionnaires and the measures and the instruments that we use to ask caregivers these types of questions.

[00:14:19] I don't have a caregiver burden thermometer that I can run across your forehead and see whether or not you've got caregiver burden.

[00:14:28] I have to ask you questions.

[00:14:29] And so these surveys, we call them measures or instruments and research.

[00:14:34] And for a long time, those surveys and instruments were created and tested in that stereotypical caregiver population, the older woman caring for her husband, the older woman caring for an aged parent.

[00:14:48] And more often than not, those studies from the 80s and the 80s and the early 90s, those study populations were made up only of white cisgender women who had a certain level of income.

[00:15:03] So their experiences may be different than an African-American caregiver or a caregiver living in a rural area with limited income and limited resources.

[00:15:14] And so one of the projects that we're working on right now is looking at all of the caregiving instruments and measures that we can find that have been used in the research over the last 40 years and doing a systematic evaluation to see how well do they work across diverse populations of caregivers.

[00:15:29] And if they work well, great.

[00:15:32] But if there are some gaps and some things that could be done better, how can we modify existing measures or create new measures that fill those gaps?

[00:15:40] Interesting. Interesting. Interesting. We have lots to talk about.

[00:15:44] Yes.

[00:15:44] We'd love more conversation with you about all of this.

[00:15:47] But let's kind of jump into an area that I really want us to be able to talk about.

[00:15:56] And that is the caregivers and older adults within the LGBTQIA plus population.

[00:16:08] We've just been talking about cultural differences.

[00:16:12] Talk about what is different for the LGBTQIA plus caregiver and for the older adult within that population.

[00:16:24] Sure.

[00:16:24] So as I mentioned, you know, there are lots of folks who are taking on caregiving roles, about 20 percent of adults.

[00:16:32] LGBTQIA plus adults take on caregiving roles more frequently than their heterosexual and cisgender peers.

[00:16:42] They're also take, well, one of the reasons that we think that that is happening and that we hear from caregivers and interviews and focus groups is that sometimes their families have an expectation that they will do the caregiving because, well, you're not married or you don't have children.

[00:16:59] And so that's when that environmental and historical and social context comes to bear on LGBTQIA plus caregivers in a way that it doesn't for heterosexual and cisgender caregivers.

[00:17:13] You know, marriage equality has only been available nationwide since 2015.

[00:17:18] So for a lot of folks in the LGBTQIA plus population, particularly older adults, they've never had the opportunity to be legally married.

[00:17:28] So sometimes there's this assumption within their biological families that, well, you've got the time and the resources to do this and we don't because we've got to take care of kids and we've got to do this, all this other stuff.

[00:17:38] So you go do that.

[00:17:40] So we hear that from our caregivers.

[00:17:43] We also know from research that for LGBTQIA plus older adults, and so I'm defining older adults as anyone, you know, 50 plus right now.

[00:17:53] So let's just think about that population.

[00:17:55] Those LGBTQIA plus older adults in this country right now are more likely not to be married, not to have a partner, not to have biological children.

[00:18:08] Those are the kinds of things that we rely on for caregiving.

[00:18:14] So then who fills the gap?

[00:18:16] Friends, neighbors, other folks in the LGBTQIA plus community.

[00:18:21] So we found in our research that one in 10 LGBTQIA plus caregivers are caring for someone they're not biologically related to.

[00:18:31] So chosen family is really important.

[00:18:34] And so that might be a reason why these folks are taking on caregiving more frequently than their heterosexual and cisgender peers, because they've got to fill those gaps that historically have been there for a variety of reasons.

[00:18:48] We also know from our research that LGBTQIA plus caregivers are taking on caregiving at a younger age.

[00:18:56] So they're significantly younger.

[00:18:58] They're significantly more racially and ethnically diverse.

[00:19:01] 90% of them are working either full or part time as compared with their heterosexual and cisgender caregiving peers for whom half may be retired.

[00:19:14] They're also managing their own chronic conditions.

[00:19:18] So a third of them in our research have their own chronic conditions they're managing.

[00:19:22] So there are a lot of different sort of societal and social things that are happening for caregivers that we researchers explain under the minority stress theory that aren't happening for other folks because of different policies and legislation over the years.

[00:19:38] And that continuing to this day, you know, victimization, discrimination and microaggressions happen to the LGBTQIA plus community in a way that it doesn't happen to others.

[00:19:47] And so when you're a caregiver and you have this extra minoritized identity that overlays across that, caregiving is a little bit different.

[00:19:59] You have just said a whole lot.

[00:20:02] Yes.

[00:20:03] Yes.

[00:20:04] You know, and I quite honestly, I'm thinking about some of my friends who are in the LGBTQIA plus population in that community and thinking about just this whole mindset of, yes, if you are single or perceived to be single.

[00:20:27] That, in other words, that relationship, that partnership that you have may not be recognized as reverend.

[00:20:36] That, that puts you in a category of being very vulnerable to additional expectation that others in a similar kind of demographic, with the exception of the LGBTQIA plus population, that the expectation would be different.

[00:20:58] Absolutely.

[00:21:00] And those types of things can sort of add up and have an impact then on those outcomes that we were talking about for caregivers.

[00:21:08] So levels of stress.

[00:21:10] In the research that we have done, my colleagues and I, when we've looked at levels of stress and we've compared that between LGBTQIA plus caregivers and non-LGBTQIA plus, so heterosexual and cisgender peers, LGBTQIA plus caregivers have significantly higher levels of stress.

[00:21:26] They more frequently are reporting moderate and high levels of stress.

[00:21:31] 75% of the caregivers in our sample reported a high, a moderate or high level of stress.

[00:21:39] We also found that the caregivers in our sample, nearly 80%, 78% of the caregivers in our sample scored above the clinical cutoff for depression on the scale that we used.

[00:21:52] To put that into context, in the research, it's usually reported as 30 to 40% of caregivers, particularly caregivers of people with memory loss, are experiencing depressive symptoms that are clinically important, clinically significant.

[00:22:12] So that's double the rate of depression.

[00:22:17] Now, we know also that LGBTQIA folks are more likely to have a history of depression and be experiencing depression.

[00:22:24] But even if we took that into account, we didn't expect it to be as high as what we found.

[00:22:32] We also know from the research that we've done, as well as national data, like data from the National Alliance for Caregiving, that LGBTQIA plus caregivers are more frequently taking on these caregiving roles.

[00:22:43] They're helping with higher levels.

[00:22:45] So they're more frequently doing some of those activities of daily living, like bathing, dressing, medical nursing tasks, like helping someone manage their blood sugar, or maybe helping them with wound care or other nursing tasks.

[00:23:02] So they're doing higher levels of care, and they experience higher levels of burden, both physical, emotional, and financial in terms of the strain.

[00:23:13] Now, that might be because they're doing higher care activities.

[00:23:19] But we also know from previous research that the LGBTQIA plus child caregiver of the older adult is three times more likely to report high levels of emotional strain than their heterosexual or cisgender siblings.

[00:23:36] So I think that's really important for ACAP when we consider that, you know, caregiving can be a challenge for anybody.

[00:23:45] But what we find is some of that LGBTQIA plus caregivers, more often than not, are reporting higher levels of challenge.

[00:23:55] And when we specifically looked at that parent-child dynamic, that's where those relational, cultural, societal things that we've been talking about and that you mentioned might really come to bear.

[00:24:07] You know, maybe the LGBTQIA plus caregiver is caring for a biological family member who they've not had a good relationship with, who hasn't been accepting of their sexual orientation or gender identity.

[00:24:22] And now they find themselves caring for that person for whatever reason.

[00:24:28] That can make things hard.

[00:24:30] I can speak from personal experience in caring for family members that caring for your first bully is a challenge.

[00:24:37] Because more often than not, if someone responds to vulnerability by bullying others, end of life and caregiving situations make someone very vulnerable.

[00:24:51] So they might fall back into those patterns.

[00:24:55] So the dynamics, the relational dynamics can be quite different.

[00:25:02] You know, I'm sitting here listening to what you're saying and thinking in the back of my brain, you know, the various situations, caregiving situations that I know and people that I know who are gay, LGBTQIA.

[00:25:23] And I'm wanting to jump to, so where do they go?

[00:25:29] That is a good question.

[00:25:32] Because I am very aware that although we may be ahead of where we used to be societally in this nation, the fact is there still are places that people don't always feel welcomed.

[00:25:49] And how do they find those welcoming spaces and welcoming people and those that have the skills to help them navigate all of these really difficult pieces of caregiving, as you're saying, caregiving for someone, providing care for someone who you know that relationship is difficult, who you know has not been respectful.

[00:26:19] I mean, on top of everything else that can be part of the caregiving experience.

[00:26:26] That is a huge overlay.

[00:26:30] Absolutely.

[00:26:32] And a very good question.

[00:26:34] And a complicated question.

[00:26:36] Yeah.

[00:26:38] Yeah.

[00:26:38] So most recently, so I found myself in a caregiving role four times in my life for both my parents at end of life and for my maternal grandparents at end of life.

[00:26:49] Because of those four individuals, my mother died first and then I was caregiver for her parents and then most recently a caregiver for my dad.

[00:26:57] And I remember having a moment in that process when I was in his hospital room and they had taken him for an MRI, I believe, and sitting there thinking, you know, I'm the caregiving expert.

[00:27:10] And this is still hard.

[00:27:14] And this is still hard.

[00:27:15] And I know everybody to call.

[00:27:16] I know everybody, I know more people to call.

[00:27:19] I probably know more people to call or email or reach out to than even the patient navigator had access to.

[00:27:25] And so I really, you know, brought into stark relief some of the findings and some of the things that my colleagues and I do.

[00:27:33] But I was also thinking about the fact that that question that you had of, well, where do you go?

[00:27:43] I know where to go to get resources and support for myself as a gay male caregiver.

[00:27:51] Other caregivers don't necessarily know that.

[00:27:54] I mean, the general caregiver may have no idea where to go when they first find themselves plopped into this caregiving situation.

[00:28:00] And more often than not, what is presented to you by health care providers or the patient navigator are support groups for spouses.

[00:28:11] Support groups for, they may be support groups for children, adult children, those kinds of things.

[00:28:19] The LGBTQ caregiver in the back of their mind has to think, okay, is this going to be a welcoming place for me?

[00:28:26] A lot of times those support groups and those services come via religious and spiritual organizations, which may or may not be welcoming and affirming.

[00:28:36] And even if they are, the LGBTQIA plus caregiver may not have a good history with that.

[00:28:42] So there's that additional overlay.

[00:28:44] What we know from the research that we've done, when we just sort of look at LGBTQI plus caregivers globally, they are less frequently accessing caregiver support services.

[00:29:01] Like respite care, social support groups, those kinds of things.

[00:29:05] Now they're more frequently remodeling homes so that the person can stay put and age in place as long as possible.

[00:29:14] But they're less frequently accessing those caregiver support services when we just look at them as a whole.

[00:29:20] But we most recently took some data that we collected and overlaid that with policy data that gave us an equity score by state, state level equity score.

[00:29:32] So things like policies and legal protections that might be in place for health care, for employment, political and religious attitudes.

[00:29:44] So it's this composite score.

[00:29:46] And when we looked at those score data, basically we had two types of states.

[00:29:51] We had low equity states and high equity states, states in which there were legal protections for LGBTQIA plus folks and states in which they were not.

[00:29:58] And so then we compared the caregiving outcomes between those two states.

[00:30:02] And we found that the caregivers that lived in the lower equity states were more frequently reporting microaggressions, had higher levels of depression, had lower levels of family quality of life.

[00:30:13] We're experiencing higher levels of caregiver stigma.

[00:30:17] And we're experiencing higher levels of stress.

[00:30:20] That did not surprise us.

[00:30:22] That's kind of like, well, yeah, you would expect that.

[00:30:25] What's unique is that no one had done this analysis before.

[00:30:28] So we want to get this published so that folks can decide it.

[00:30:31] The thing that did sort of like give us a moment of pause was the use of caregiver resources.

[00:30:39] Remember, I said, when we looked at the caregivers overall, they were less likely to use those resources, but that was completely driven by where they were living.

[00:30:47] If they lived in those low equity states, then they were absolutely not using those caregiving resources or they were less frequently using those caregiving resources.

[00:30:54] But if they lived in higher equity states, they weren't using those caregiving resources.

[00:30:59] And healthcare providers were asking them questions like, do you have what you need to care for yourself?

[00:31:04] Do you have what you need to care for your person?

[00:31:06] It was a stark contrast.

[00:31:09] And so we've known for some time in healthcare research that where you live has an impact on your health and well-being.

[00:31:18] And that's true for caregivers and caregiver resources.

[00:31:21] We also know from our research that maybe LGBTQIA plus caregivers are filling that gap with online health resources.

[00:31:30] So they're more frequently using the internet for health-related reasons.

[00:31:34] And they're more frequently seeking out those resources.

[00:31:37] And maybe it's because they just don't want to deal with the stigma and the microaggressions of going to a support group or accessing this respite care.

[00:31:47] Or I'll just do this online thing because I'm safer.

[00:31:52] I'm more protected.

[00:31:53] I don't have to out myself if I'm not out.

[00:31:57] And so that is a space that we have been leaning into.

[00:32:00] My colleagues and I have been leaning into in terms of our research and understanding the caregiver's experiences and how they're using digital health technology and tools to support themselves when they may not feel like the sort of in-person supports are there for them.

[00:32:19] Which is one of the justification, I guess, or encouragement, I guess, really more for there being online resources.

[00:32:33] For the LGBTQIA plus population as well as so many others who are in rural areas and can't get somewhere or, you know, because the caregiving situation is such that it just doesn't lend itself to, okay, yes, I'm going to carve out an hour, hour and a half to go to this support group or even an ACAP program.

[00:32:56] And as much as I think ACAP can be helpful.

[00:33:01] Yeah.

[00:33:02] Yeah.

[00:33:03] I think a sort of, I don't want to say a silver lining, an opportunity that came out of COVID and a lesson that I think we learned well is that caregivers are online and that caregiver support online is useful and a thing.

[00:33:21] Several of us were trying to make that argument before the pandemic, that caregivers were in these online spaces and that was a place that we could support them and provide them the resources and information that they needed.

[00:33:34] And sometimes folks would be like, no, they're not.

[00:33:38] Old people aren't online.

[00:33:40] Like, well, not all caregivers are older adults.

[00:33:42] Anyway, I think we've learned since COVID that it is a space in which we can provide meaningful support to caregivers of all different types of identities and particularly caregivers who may not feel like they can go to an in-person event.

[00:33:59] Right.

[00:34:01] Right.

[00:34:01] Absolutely.

[00:34:01] Absolutely.

[00:34:02] Yeah.

[00:34:04] We are, goodness, we can go in so many different directions with all of this.

[00:34:09] Let me ask that you have talked a lot about what you all have learned through your research relative to the LGBTQIA plus population community.

[00:34:21] What, is there anything else that we haven't touched on that we really ought to?

[00:34:28] That is a good question.

[00:34:30] I'm having to think about all the things that I've said so far.

[00:34:34] Well, one of the things that we've learned and one of the things that I try to embrace as much as possible, particularly, you know, when I have opportunities to talk to people about my research is that data make us credible, but stories make us memorable.

[00:35:15] Mm-hmm.

[00:35:17] And I'm going to take a look at the LGBTQIA plus representative data to talk about our caregiving population, that being the LGBTQIA plus caregiver population.

[00:35:23] And I keep saying LGBTQIA plus as an aside, because I want to be as representative as possible of sexual and gender minorities in this country because the community is not a monolith.

[00:35:39] And there are lots of different experiences.

[00:35:41] We find, for example, that bi plus caregivers, so bisexual, pansexual, queer caregivers may have poorer outcomes related to caregiving and health than their gay and lesbian peers.

[00:35:55] So even within the LGBTQIA plus caregiver community, there are differences that we need to explore and respect and support.

[00:36:06] But back to the data, the 2015 was the first year that the National Alliance for Caregiving added a question about sexual orientation to their caregiving in the U.S. survey that they do every five years.

[00:36:19] Awesome.

[00:36:20] Awesome.

[00:36:20] It was wonderful.

[00:36:23] That was only nine years ago.

[00:36:26] And they asked one question.

[00:36:29] Do you identify as a member of the LGBT community?

[00:36:33] Yes or no?

[00:36:35] That was it.

[00:36:36] So we couldn't, as much as those data are valuable in some of the first, and we use those data and publish those data, we weren't able to look at differences between lesbian caregivers, gay caregivers, bi caregivers, transgender caregivers.

[00:36:51] We weren't able to look at who they were caring for in terms of different conditions.

[00:36:56] Was it dementia?

[00:36:57] Was it cancer?

[00:36:58] Was it end of life?

[00:36:59] Was it palliative care?

[00:37:00] We were able to look at the data that we've had to look at the caregiving community in the U.S., and it was really, really cool.

[00:37:00] We got to see that there just wasn't enough data.

[00:37:02] And so as we've continued to gain more data, we've had a lot of data about what is happening, but we haven't had a lot of data about why it might be happening.

[00:37:13] And so what my colleagues and I have been doing is talking to caregivers, having interviews with caregivers, focus groups with caregivers, taking them the what?

[00:37:24] The things that we see in the quantitative numeric data and asking them to help us explain why this may be going on.

[00:37:32] So why might you be reporting higher levels of stress?

[00:37:36] Why might you not be using these caregiving resources?

[00:37:39] And that's where we find this information about, well, I don't know that I'm going to be welcome there.

[00:37:45] Or, you know, for example, when we collected data of our own for LGBTQIA plus caregivers of people with dementia, even though in that survey we said family is who you say they are.

[00:37:58] We had some space at the end for folks to give us some comments.

[00:38:03] And several folks would write, I know you said that family was who I say it is, but I didn't know if you meant my biological family or my chosen family.

[00:38:10] So when I saw questions that asked about my family, I answered this way or answered that way.

[00:38:15] And sometimes they said, I answered about my bio family and they're great or answered about my bio family and I really don't have anything to do with them.

[00:38:22] So we're still learning about the why of all the sort of what's that we have.

[00:38:31] We've got the data, but those stories are really helping us to understand what are some of the more important aspects to explore further?

[00:38:43] And what is it that LGBTQIA plus caregivers and the people that they're caring for are really looking for in terms of research, in terms of services and supports?

[00:38:58] And that can only come from the stories that they tell us.

[00:39:01] And those stories can be so rich and so instructive as well as cathartic that someone wants to listen to my story.

[00:39:13] I want to go back.

[00:39:15] I know our time is kind of drawing to a close, but I want to go back to that question that you certainly resonated with.

[00:39:26] And that is that you are the expert when it comes to where do you turn?

[00:39:32] Where are the resources?

[00:39:34] You know all of that.

[00:39:37] And I remember years ago sitting with a woman who is a dementia educator, dementia expert.

[00:39:46] This had been her whole world for most of her career.

[00:39:51] But when it became her mother that she recognized the signs, she was like, I'm not sure what to do.

[00:40:02] I don't know where to turn.

[00:40:04] Which is exactly what you've just said and what we always say is it does not matter.

[00:40:09] It does not matter what your education is, what your background is, what you do for a living.

[00:40:14] None of it matters when it's our mother, father, loved one.

[00:40:19] It's different.

[00:40:20] And, you know, a lot of times we may intellectually know where to turn, but, you know, heart-wise, gut-wise, it's a hold of a bargain.

[00:40:32] All of that said, I want to go back because if there are people who listen to this podcast within the LGBTQIA community,

[00:40:44] I want for them to be able to walk away with, okay, I have a nugget that can really be helpful to me.

[00:40:55] So where would you suggest that they turn to, even if it's one place, is there a place that they can go?

[00:41:06] So there is a one place that I can talk about that they can go.

[00:41:12] I'm pretty sure, based on conversations we've had and what I've seen, that ACAP is a place that they can go.

[00:41:17] So I want to make that clear.

[00:41:20] Yes.

[00:41:21] I hope they would always feel welcome.

[00:41:23] I hope that anybody and everyone would always feel welcome within ACAP.

[00:41:29] So thank you for that.

[00:41:30] Most, of course.

[00:41:33] Another project that my colleagues and I have right now that's funded through the National Institute on Aging is called the RISE Project.

[00:41:40] And RISE stands for Research Inclusion Supports Equity.

[00:41:44] And we've had this project going now.

[00:41:46] We're in our fourth year.

[00:41:48] And this particular type of grant was created by the NIA to help support inclusion of underrepresented, minoritized, under-researched groups in aging research, whether that's the older adult, the caregiver, or both.

[00:42:06] And so all of these different projects have focused on underrepresented caregivers.

[00:42:13] So there's a project with a similar type of grant that's focused on Asian American and Pacific Islander caregivers.

[00:42:21] So each one has had a particular focus.

[00:42:23] And ours, the RISE Project, is the first nationally coordinated collaborative effort to focus on LGBTQIA plus caregivers of people living with memory loss or experiencing memory loss.

[00:42:35] And it really has been about understanding where are the gaps and making sure that we're included in the research, what are folks looking for, and how do we get resources, either opportunities to be in research projects or just resources, period.

[00:42:53] And so we have a website, the RISE Registry.org.

[00:42:58] It has information about the project, of course, but there is a specific page on that website that are all of the community resources that we continue to find and collate and put up either at the national level or at the state level.

[00:43:15] Part of our national advisory board for that project includes folks like Carl Hill, who's the chief diversity officer for the Alzheimer's Association.

[00:43:24] We have the executive director of Centerlink, which is sort of like the overarching umbrella organization that Pride centers around the country have an affiliation with.

[00:43:33] And so I'm biased in thinking and hoping and believing that that particular page on that website, the community resources page, is probably one of the most valuable things that's going to come out of that project.

[00:43:49] Because it is a space where we are, as much as possible, finding good, open, affirming resources for caregivers and older adults across the country.

[00:44:03] So the RISE Registry.org is a place that folks can go and find resources for caregiving and memory loss as well.

[00:44:10] As well as rainbowsofaging.org.

[00:44:15] That website, my collaborators and I have that website, and it lists all the different research that we're doing and all the resources that we can find.

[00:44:24] And then SAGE, so Services and Advocacy for LGBTQI plus elders, is another resource for older adults.

[00:44:32] And they have a caregiving resource section in collaboration with AARP on their website.

[00:44:38] I was aware of SAGE.

[00:44:41] I was not aware of the RISE Registry.org and rainbowsofaging.org.

[00:44:50] I'm saying that again just in case somebody missed it.

[00:44:55] So thank you.

[00:44:56] Thank you for your work.

[00:44:57] But also thank you for pointing us in those directions that there are places that people can go at least sort of, as I call it, a one-stop shop.

[00:45:06] You know, go here and get all kinds of information.

[00:45:11] Yeah.

[00:45:12] And a place to start.

[00:45:13] And if folks don't find what they're looking for, there's a contact us section where they can send us a message.

[00:45:18] And if we have it and we've not put it up yet for some reason, we can point them in the direction of a resource or a person.

[00:45:24] We're happy to do that because my colleagues and I have the philosophy that we are doing this work to actually support the health and well-being of LGBTQI plus caregivers and older adults.

[00:45:35] And it really doesn't make any sense if we're just sort of like hoarding all the information and the research and not putting it in the hands of people that can actually use it.

[00:45:44] Right.

[00:45:45] Absolutely.

[00:45:46] Thank you for that.

[00:45:48] Okay.

[00:45:48] We have talked about a whole lot of things.

[00:45:51] Are there some new directions for research in the future that you're excited about and that you would offer as, you know, stay tuned, be on the lookout for?

[00:46:04] Yeah.

[00:46:05] Yeah.

[00:46:05] So most recently in November, I was at the Gerontological Society of America conference.

[00:46:13] And it was, I always enjoy going to that conference because I get to see all the folks that I collaborate with, but also hearing about all the work that they're doing.

[00:46:21] So some of the things that stand out in my mind is the National Alliance for Caregiving, which does the Caregiving in the U.S. survey every five years.

[00:46:31] Along with AARP.

[00:46:32] Along with AARP.

[00:46:34] Next year, 2025 is the next time that those data will be coming forward.

[00:46:39] So a lot of the statistics I gave you today come from the 2020 survey.

[00:46:44] 2025 is coming out, and it's going to include ways of looking at those caregivers who do get a stipend, those family caregivers who might be getting a stipend, and seeing if their experiences are different.

[00:46:54] There are going to be some new information about caregiver health.

[00:46:59] So they're using the CDC Healthy Days scale as a way of giving us more information about the caregiver's experience and not just emotional strain, financial strain, physical strain.

[00:47:09] All good data, but every five years, they continue to expand the information they're putting forward, and they're going to have a data dashboard so that folks can go in and sort of key in the information they're looking for and get more specific information.

[00:47:24] So that was exciting to hear.

[00:47:26] There are folks who are looking at, particularly for the LGBTQIA plus community, long-term care support and services, and what types of culturally congruent care training do the providers in those facilities and communities have?

[00:47:44] What policies exist?

[00:47:46] What are some of the outcomes for their patients?

[00:47:49] We know from previous data that living in, again, living in a space that supports who you are, supports your outcomes and well-being, and that if you are LGBTQIA plus and have to go into a facility where you feel like you're going back into the closet, that can increase your mortality by 30%.

[00:48:10] So folks are beginning to really jump into that area and understand what's going on in the long-term care services and support area.

[00:48:20] And then those caregiving networks that I mentioned before, and realizing that it may not be just the primary caregiver or secondary caregiver.

[00:48:27] It may not just be bio family, regardless of different identities, and particularly for LGBTQIA plus caregivers.

[00:48:35] And sort of looking at these caregiving networks and how they change and develop over time and what some of their needs are and how do those needs support the person that is receiving the care.

[00:48:46] So those are some of the things that really stuck out to me from that conference last month.

[00:48:52] That's some really exciting stuff.

[00:48:55] Because the reality is we want all people, particularly as we age, to feel comfortable wherever they are, whatever their need is.

[00:49:06] And as I age, I'm becoming more and more aware that as we age, things begin to happen.

[00:49:12] Even if we are very healthy, things begin to happen and we begin to need more services and more support.

[00:49:22] So I'm grateful that there is a movement away for my friends and others that are not white, Anglo-Saxon, Protestant, whatever.

[00:49:38] That there is a place, that there will be places that will be welcoming and comfortable for all.

[00:49:48] Absolutely.

[00:49:49] And I know we've talked about LGBTQIA plus caregivers specifically.

[00:49:57] But we all respond well and better to things where we can see ourselves.

[00:50:05] And so if there are caregiver support services that we can see ourselves in, we're more likely to use them and they're more likely to then have their benefit.

[00:50:18] A lot of caregiver support programs and interventions, particularly those that have been created from like a research perspective, sit on the shelf.

[00:50:26] And we know that they work well, but they sit on the shelf because maybe the caregiver doesn't see themselves.

[00:50:32] And so some of the work that my colleagues and I are now moving into, now that we've learned a lot of the what's, what are some of the targets for things that we need to look at for LGBTQIA plus caregivers?

[00:50:43] How can we take existing interventions that work really well?

[00:50:47] Like the savvy caregiver intervention, we just got a new grant to adapt the savvy caregiver intervention to LGBTQIA plus caregivers.

[00:50:55] Or are there specific things for which there isn't an intervention that we can fill a gap?

[00:51:01] And so it's exciting to see the work that my colleagues and I are doing in developing and testing and implementing and putting things out there again to support the caregivers.

[00:51:13] Well, I, along with so many others, want to thank you and your colleagues for what you are doing.

[00:51:18] Thank you for all of the attention that you are bringing to a particular community that has been very much under the radar for a long time.

[00:51:29] So thank you for that.

[00:51:30] Thank you, Joel, for spending this time with me and talking about a topic that needs to be talked about.

[00:51:39] Thank you so very much.

[00:51:41] You're most welcome.

[00:51:43] Thank you also to our listeners.

[00:51:45] Hopefully this insight, this conversation and information will be helpful to you.

[00:51:50] And many, many thanks to Pace at Home in Newton, North Carolina for sponsoring all of our caregiver community podcasts.

[00:51:57] This podcast is part of the Mesh Network of online shows and podcasts.

[00:52:01] We record one new ACAP community, caregiver community podcast each month, addressing a wide range of topics related to caregiving and advocating for an older adult.

[00:52:13] You'll find our podcast on any platform where you listen to podcasts, as well as our website, www.acapcommunity.org.

[00:52:22] While you're on our site, we hope you will take a few minutes to learn more about ACAP, our educational programs and our local efforts.

[00:52:29] And if there are other topics you'd like for us to address, please do let us know.

[00:52:35] Again, thank you so much, Joel, for your help today.

[00:52:39] To everyone, stay well.

[00:52:42] Thanks for being with us.

[00:52:43] Bye for now.

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