A Comparative Analysis of Family Quality of Life Between Heterosexual and Sexual Minority Caregivers of People with Dementia

Abstract

Providing care for someone with Alzheimer’s disease or related dementias (ADRD) is associated with significant physical and mental strain affecting quality of life among caregivers. However, little attention has been given to sexual minority (SM; lesbian, gay, bisexual, queer) people caring for those with ADRD. In this cross-sectional study, we used psychosocial measures to describe the characteristics and family quality of life of SM and heterosexual caregivers for people with ADRD. SM caregivers were significantly younger and more frequently reported full or part-time employment compared with their heterosexual counterparts. Lesbian and bisexual caregivers reported more difficulty in paying for everyday basics. After controlling for demographic covariates, SM caregivers had significantly higher family quality of life scores compared with heterosexual caregivers. This study is among the first to compare family quality of life between SM and heterosexual caregivers. Findings can guide development of targeted interventions for SM caregivers.

Keywords

dementia caregiver sexual minority family quality of life

Introduction

Providing care for someone with Alzheimer’s disease or related dementias (ADRD) is known to be associated with significant physical and mental strain that has deleterious effects on health and quality of life among caregivers (D’Aoust et al., 2015; Gouin et al., 2008; Schulz & Sherwood, 2008; Vitaliano et al., 2003). However, until recently insufficient attention had been given to sexual minority (SM; lesbian, gay, bisexual, queer) people who are caregivers (Jablonski et al., 2013; McGovern, 2014). SM people in the general population are known to experience poorer physical and mental health (Gonzales & Henning-Smith, 2017; Potter & Patterson, 2019) such as increased rates of depression and depressive symptoms (Nelson & Andel, 2020; Russell & Fish, 2016), as well as risk for cardiovascular disease (Caceres et al., 2017) and cognitive decline (Hsieh et al., 2020; Perales-Puchalt et al., 2019). Those who are caregivers have significantly poorer health relative to heterosexual caregivers. Using population-based data from health surveillance research, Boehmer and colleagues found that SM caregivers had 1.2–2.0 greater odds of reporting poor or fair health and higher odds of having poorer physical (ORs 1.4–4.7 for women and 1.5–5.6 for men) and mental (ORs 1.4–4.7 for women and 1.5–5.6 for men) health days compared with heterosexual caregivers (Boehmer et al., 2019).

The number of SM adults providing informal care for family and friends ranges from 27% to 45% (Fredriksen-Goldsen et al., 2018). SM adults take on caregiving roles at a higher rate (one in five) than the general population (one in six) (AARP & National Alliance for Caregiving, 2015). SM caregivers also are demographically different from heterosexual caregivers; they are significantly younger, more racially/ethnically diverse, more likely to help with medical and nursing tasks (e.g., managing medications, monitoring blood pressure or blood sugar, or helping with incontinence), and experience higher levels of physical, emotional, and financial strain (Anderson & Flatt, 2018; Boehmer et al. 2019; Muraco & Fredriksen-Goldsen, 2014). These higher levels of strain may be related to SM caregivers less frequently seeking out supportive services and not disclosing or being given the option to disclose their SM identities to health care and service providers (Anderson et al., 2021; Croghan et al., 2014). Additionally, SM aging care partnerships may suffer from overlapping years of stigma (Hulko, 2009; Jablonski et al., 2013; Price, 2008), with fear of discrimination, denial of services, and/or receipt of poor-quality services as reasons for a reluctance to seek support (Fredriksen-Goldsen & Hoy-Ellis, 2007; Hoy-Ellis, 2016; Hoy-Ellis & Fredriksen-Goldsen, 2016). Despite the acknowledged disparities in this area, gaps remain in understanding the unique needs of SM caregivers (Muraco & Fredriksen-Goldsen, 2014). This is compounded by the exclusion of questions related to sexual orientation from most large public health and aging surveys (Fredriksen-Goldsen & Kim, 2017), limiting the data available. Moreover, ADRD caregiving research rarely explores its impact on the SM community (McGovern, 2014). Thus, caregiver support services that reflect knowledge and understanding of the well-being of SM caregivers are limited. This shortage might also explain why caregiving services are used less frequently by SM caregivers (Anderson et al., 2021; Jablonski et al., 2013).

There is known strain experienced by and documented among the general population of caregivers for people with ADRD (Ringer et al. 2016), but very few published sources document family quality of life experienced by those individuals and families providing care for those with ADRD (Rose et al., 2020). Rose et al. (2020) define family quality of life as “a dynamic sense of well-being of the family, collectively and subjectively defined and informed by its members, and by which individual- and family-level needs interact.” The concept of family quality of life among SM people caring for someone with ADRD has not been examined, and we do not yet know how SM caregiver’s family quality of life compares to that of heterosexual caregivers. This is important given the potential differences in family structures between SM and heterosexual caregivers, with SM caregivers more frequently providing care for families of choice rather than biological family compared with heterosexual caregivers (Anderson & Flatt, 2018; Anderson et al., 2021). We suspect that when the strain of caregiving for individuals with ADRD is combined with pre-existing risks for poorer health and quality of life, SM caregivers of people with ADRD and their care recipients could experience poorer family quality of life. Our study addresses this issue by describing the demographic characteristics and family quality of life in a sample of SM and heterosexual caregivers for people with ADRD and draws comparisons between groups by sexual orientation using a cross-sectional design. The study was guided by the Stress Process Model (Figure 1; Pearlin et al., 1990), which takes into account the impact of demographic and caregiver characteristics in the context of stress, for example the relationship to the care recipient. Past research with SM caregivers has shown differences in strain related to familial relationships (Anderson & Flatt, 2018) and family expectations (Shippy, 2007). In addition to the relationship of the caregiver to the person with ADRD, the analytical model included sexual orientation, age, race, ethnicity, partner status, income, and education, all of which are social characteristics within the Stress Process Model.

Figure 1.

Concepts of the Stress Process Model (adapted from Pearlin et al., 1990). The Stress Process model is made of up four domains: background and context of stress, primary and secondary stressors, meditators of stress, and stress-related outcomes. The background characteristics of the caregiver and the context of caregiving influence the primary and second stressors, mediators, and stress-related outcomes. Primary and secondary stressors affect each other as well as the stress-related outcomes. Mediators have an impact on stressors and stress-related outcomes. Variables and measures assessed in the present study for each concept are delineated in the figure.

Methods

Study Sample and Data Collection

Institutional Review Board approval was obtained prior to initiating this study. Adults 18 years and older who self-identified as a family member or a caregiving, non-relative for a person with ADRD were eligible to participate in the study. Caregivers were defined as people who assist with and attend to the needs of an older adult (age ≥50 years) for at least 8 hours each week on average. Data were drawn from two cross-sectional studies (SM caregivers, Anderson et al., 2021; heterosexual caregivers, Rose et al., 2020) that used similar surveys and instruments and built upon each other. The first study by Rose et al. (2020) collected data from heterosexual caregivers and gave rise to a study focused on SM caregivers (Anderson et al., 2021), which included more measures and data elements than the first. However, given the comparability in baseline elements and the fact that the study specific to SM caregivers was inspired by the first, we combined similar data elements to allow for the current comparative analysis to begin to understand family quality of life among these two populations of caregivers. The study by Rose et al. (2020) recruited a sample of heterosexual caregivers and did not assess whether participants were transgender or cisgender during data collection; thus, data from transgender caregivers collected in the study by Anderson et al. (2021) were not included in the present analysis.

Participants were identified using several recruitment methods, including digital methods via social media nationwide (Anderson et al., 2021) and through the support of a memory and aging neurology clinic and aging centers and agencies in Virginia and Tennessee (Rose et al., 2020). Once individuals were identified, surveys were distributed to participants using multiple methods (e.g., hand delivered at meetings/workshops, flyers with contact information for participants to be mailed a survey, electronically). The survey included a written alteration of consent indicating that consent was implied by completing the questionnaires. The combined total sample size of participants with complete data was 415.

Survey Items and Instruments

Family Quality of Life in Dementia

The Family Quality of Life in Dementia Scale is a 41-item scale designed to assess family quality of life in families caring for someone with ADRD (Rose et al., 2020). The instrument includes four domains: caregiver support (e.g., “My family has outside help available to us to take care of special needs of all family members.“), disease-related support/medical care (e.g., “My family gets medical care when needed.“), family interactions (e.g., “My family has the support needed to manage our feelings.“), and well-being (e.g., “My family member with dementia has support to thrive in his/her environment.“). Individual items are rated on a 4-point scale generating a total score, with higher scores indicating higher levels of family quality of life. The scale has high internal consistency (Cronbach’s α = 0.95) and validity (Rose et al., 2020). The Cronbach’s α in the present sample was 0.96.

Demographic Characteristics

Demographic characteristics included sexual orientation, gender, age (years), race, ethnicity, highest level of education, income, difficulty in affording the basics, employment status, insurance status, living location, and caregiver status (described above). Respondents’ sexual orientation was assessed with a sexual identity measure where response options were as follows: gay, lesbian, or bisexual, or specifying their identity if not listed (referred to as queer in this paper). Responses to gender included female and male. Responses to racial identity included White, African American/Black, Native American/Alaska Native, Asian, Pacific Islander/Native Hawaiian, other, do not know, or refuse to answer. Ethnicity was ascertained by responses to the question “Do you consider yourself to be of Hispanic/Latino American origin, such as Mexican, Puerto Rican, Cuban or other Spanish background?” (yes, no).

Level of education was based on response to highest grade or year of school completed (≤6, 7–11, high school/GED, some college, college graduate, post-graduate). Level of income was delineated as $1000–$10,000; $10,001–$20,000; $20,001–$30,000; $30,001–$40,000; $40,001–$50,000; $50,001–$60,000; $60,001–$70,000; or >$70,000. Difficulty in affording the basics was assessed by responses to the question “How hard is it for you to pay for the very basics like food, housing, medical care and heating?” (not difficult at all, not very difficult, somewhat difficult, very difficult). Employment status included employed at a job for pay, full time; employed at a job for pay, part-time; homemaker, not currently working for pay; not currently employed, retired; or not currently employed, not retired. Insurance status was delineated as public (Medicare, Medicaid), private, military, or none. Living location was captured by description (on a farm/ranch, in a rural area [not a farm/ranch], in a small rural town, in a small town, in a medium size city, in a large city, in a suburban area, or in a major metropolitan area).

Additional caregiver characteristics included the caregiver’s relationship status (single/never married, married/partnered, widowed, separated, divorced), and their relationship to the person with ADRD (spouse/partner, daughter, son, sibling, other relative, friend, neighbor, other).

Data Analyses

We used SPSS version 25 for all data analyses. Prior to analysis, data were reviewed for completeness and accuracy. The level of significance for statistical tests was set at p < .05. Descriptive statistics for the sample were calculated, including means and standard deviations for continuous variables and frequencies and percentages for categorical variables. Analyses of variance and chi-squared tests (Fisher’s exact test) were used to assess differences in caregiver characteristics by sexual orientation, including total and domain scores of the Family Quality of Life in Dementia Scale. A multivariate linear regression model was used to examine the associations between demographic and caregiver characteristics related to the Stress Process Model (sexual orientation [referent = heterosexual], age, race [referent = White], ethnicity [referent = non-Latinx/Hispanic], partner status [referent = never married], income [referent = <$50,000], education [referent = less than college], and relationship to the care recipient [referent = spousal caregiver]) and family quality of life total scores. There was no evidence of considerable multicollinearity between model parameters as assessed by variance inflation factors and variance proportions.

Results

The demographic characteristics of the sample are summarized in Table 1. The mean age of caregivers in the sample was 45.7 ± 15.8 years. SM caregivers were significantly younger than their heterosexual counterparts (p < .001). Most heterosexual caregivers were female (78%) whereas there were fairly even numbers of females (48%) and males (52%) among the SM caregivers. The sample was mostly White (75%), with significantly more African American/Black individuals among the heterosexual caregivers (31%; p < .001) versus the SM caregivers (10%). There were no Latinx/Hispanic individuals among the heterosexual caregivers, whereas 36% of the SM caregivers were Latinx/Hispanic. Nearly half of the sample was college-educated (48%) with no differences in level of education by sexual orientation (p = .49). The majority of the sample was married or partnered (61%); however, significantly more gay and lesbian caregivers reported having never married (p < .001). Significantly more SM caregivers reported full or part-time employment (90.9%; p < .001) compared with heterosexual caregivers; nearly half of heterosexual caregivers in the sample were retired (46%).

Table 1.

Demographic characteristics of the sample.

Characteristic	Gay (n = 123)	Lesbian (n = 38)	Bisexual (n = 56)	Queer (n = 69)	Heterosexual (n = 129)	Total Sample N = 415	p-value
Age (years)	37.7 ± 8.7	33.6 ± 8.5	37.3 ± 8.8	39.0 ± 7.6	64.1 ± 12.0	45.7 ± 15.8	<0.001
Gender
Female	—	38 (100%)	43 (77%)	38 (55%)	100 (78%)	219 (53%)
Male	123 (100%)	—	13 (23%)	31 (45%)	29 (22%)	196 (47%)
Race							<0.001
White	108 (88%)	27 (71%)	44 (79%)	48 (70%)	85 (66%)	312 (75%)
African American/Black	8 (7%)	6 (16%)	6 (11%)	9 (13%)	40 (31%)	69 (17%)
Native American/Alaska Native	4 (3%)	3 (8%)	4 (7%)	9 (13%)	2 (2%)	22 (5%)
Asian/Pacific Islander/Other	3 (2%)	2 (5%)	2 (4%)	3 (4%)	2 (2%)	12 (3%)
Latinx/Hispanic							<0.001
Yes	46 (37%)	25 (66%)	21 (37%)	11 (16%)	—	103 (25%)
No	77 (63%)	13 (34%)	35 (63%)	58 (84%)	129 (100%)	312 (75%)
Years of education							0.46
High School/Some College	72 (59%)	18 (47%)	30 (54%)	36 (52%)	61 (47%)	217 (52%)
College/Post-graduate	51 (41%)	20 (53%)	26 (46%)	33 (48%)	68 (53%)	198 (48%)
Partner status							<0.001
Never married	44 (36%)	25 (66%)	16 (29%)	7 (10%)	11 (9%)	103 (25%)
Married/Partnered	74 (60%)	9 (24%)	34 (61%)	43 (62%)	92 (71%)	252 (61%)
Widowed/Divorced/Separated	5 (4%)	4 (11%)	6 (11%)	19 (27%)	26 (20%)	60 (14%)
Employment status							<0.001
Employed full time	101 (82%)	24 (63%)	36 (64%)	29 (42%)	33 (26%)	223 (54%)
Employed part time	17 (14%)	11 (29%)	18 (32%)	24 (35%)	16 (12%)	86 (20%)
Homemaker, not currently working for pay	3 (2%)	2 (%%)	1 (2%)	2 (3%)	12 (9%)	20 (5%)
Retired	1 (1%)	—	—	5 (7%)	59 (46%)	67 (16%)
Unemployed	1 (1%)	1 (3%)	1 (2%)	9 (13%)	9 (7%)	19 (5%)
Insurance coverage type							0.004
Public	58 (47%)	21 (55%)	30 (54%)	29 (42%)	62 (48%)	200 (48%)
Private	63 (51%)	16 (42%)	25 (45%)	32 (46%)	57 (44%)	193 (47%)
Military	2 (2%)	—	—	8 (12%)	4 (3%)	14 (3%)
Uninsured	—	1 (3%)	1 (2%)	—	6 (5%)	8 (2%)
Household income							<0.001
≤$10,000	—	—	—	3 (4%)	10 (8%)	13 (3%)
$10,001–$20,000	1 (1%)	—	1 (2%)	11 (16%)	11 (9%)	24 (6%)
$20,001–$30,000	9 (7%)	2 (5%)	4 (7%)	17 (25%)	17 (13%)	49 (12%)
$30,001–$40,000	16 (30%)	4 (11%)	9 (16%)	10 (15%)	17 (13%)	56 (13%)
$40,001–$50,000	12 (10%)	7 (18%)	12 (21%)	11 (16%)	17 (13%)	59 (14%)
$50,001–$60,000	16 (13%)	6 (16%)	6 (11%)	4 (6%)	15 (12%)	47 (11%)
$60,001–$70,000	39 (32%)	16 (42%)	12 (21%)	5 (7%)	10 (8%)	82 (20%)
>$70,000	30 (24%)	3 (8%)	12 (21%)	8 (12%)	32 (25%)	85 (21%)
Difficulty in paying for everyday basics?							<0.001
Not difficult at all	63 (51%)	3 (8%)	15 (27%)	5 (7%)	51 (40%)	137 (33%)
Not very difficult	28 (23%)	17 (45%)	20 (36%)	43 (62%)	43 (33%)	151 (36%)
Somewhat difficult	30 (24%)	18 (47%)	20 (36%)	19 (28%)	24 (19%)	111 (27%)
Very difficult	2 (2%)	—	1 (2%)	2 (3%)	11 (9%)	16 (4%)
Living location							<0.001
Farm or ranch	—	2 (5%)	—	2 (3%)	8 (6%)	12 (2%)
Rural area	1 (1%)	1 (3%)	2 (4%)	18 (26%)	27 (21%)	49 (12%)
Small rural town	4 (3%)	2 (5%)	5 (9%)	12 (17%)	14 (11%)	37 (9%)
Small town	31 (25%)	7 (18%)	5 (9%)	2 (3%)	20 (16%)	65 (16%)
Medium-sized city	24 (20%)	6 (16%)	10 (18%)	7 (10%)	20 (16%)	67 (17%)
Large city	41 (33%)	13 (34%)	17 (30%)	12 (17%)	6 (5%)	89 (21%)
Suburban area	10 (8%)	7 (18%)	8 (14%)	11 (16%)	27 (21%)	63 (15%)
Major metropolitan area	12 (10%)	—	9 (16%)	5 (7%)	7 (5%)	33 (8%)
Living with person with memory loss							<0.001
Yes	73 (59%)	8 (21%)	41 (73%)	12 (17%)	76 (59%)	210 (51%)
No	50 (41%)	30 (79%)	15 (27%)	57 (83%)	53 (41%)	205 (49%)
Relationship to the person with memory loss							<0.001
Spouse/partner	79 (64%)	11 (29%)	29 (52%)	15 (22%)	48 (37%)	191 (46%)
Daughter	—	4 (10%)	10 (18%)	17 (25%)	49 (38%)	86 (21%)
Son	31 (25%)	—	5 (9%)	12 (17%)	3 (3%)	36 (8%)
Other Relative/Friend	13 (11%)	23 (61%)	12 (21%)	25 (36%)	29 (22%)	102 (25%)

Approximately half of the sample (52%) reported an income ≥$50,000, with heterosexual and gay caregivers more frequently reporting incomes >$70,000 and queer caregivers more frequently reporting incomes <$30,000 (p < .001). Despite the relatively high levels of income, lesbian and bisexual caregivers reported higher levels of difficulty in paying for everyday basics (p < .001). Though roughly half of the caregivers (51%) did not live with their care recipients, lesbian (79%) and queer (83%) caregivers more frequently reported caregiving from a distance while bisexual caregivers (73%) more frequently resided with their care recipients (p < .001). A plurality of caregivers identified as the spouse or partner (46%) of the person with ADRD, with significantly more SM caregivers identifying as an unrelated friend or other relative of the person with ADRD.

Family quality of life scores differed by sexual orientation, with queer and lesbian caregivers reporting significantly lower family quality of life total scores (Table 2; p < .001). Domain scores differed significantly by sexual orientation, with queer and lesbian caregivers reporting significantly lower scores on each of the four domains of the scale: caregiver support, disease-related support/medical care, family interactions, and well-being (Table 2; p < .001). Among SM participants, gay caregivers reported the highest total and domain scale scores.

Table 2.

Family Quality of Life in Dementia (FQOLD) Scale scores.

	Gay (n = 123)	Lesbian (n = 38)	Bisexual (n = 56)	Queer (n = 69)	Heterosexual (n = 129)	Total Sample N = 415	p-value
FQOLD total score	156.1 ± 24.4	146.1 ± 32.9	153.3 ± 26.5	129.5 ± 21.7	156.1 ± 28.9	150.4 ± 28.2	<0.001
Caregiver support domain	29.8 ± 5.2	27.3 ± 7.1	28.6 ± 5.3	24.3 ± 5.0	25.4 ± 7.1	27.1 ± 6.3	<0.001
Disease-related/medical care support domain	34.4 ± 5.2	32.1 ± 7.8	33.3 ± 6.4	28.4 ± 6.0	37.5 ± 5.4	34.0 ± 6.6	<0.001
Family interactions domain	53.3 ± 8.6	48.7 ± 11.7	51.5 ± 9.3	43.9 ± 8.5	54.3 ± 11.5	51.4 ± 10.6	<0.001
Well-being domain	36.4 ± 6.6	34.5 ± 8.7	36.9 ± 7.0	30.9 ± 5.9	36.7 ± 9.3	35.5 ± 7.9	<0.001

Caregiver Characteristics and Family Quality of Life

The overall regression model was significant (p < .001) and explained 26.9% of the variance in family quality of life (Table 3). When analyzed with other demographic covariates, SM caregivers had significantly higher family quality of life total scores compared with heterosexual caregivers (B = 16.28, SE = 4.70, p = .001). As caregiver age increased by 1 year, family quality of life total scores decreased by 0.28 points (p = .039). Compared with White caregivers, African American/Black caregivers (p = .048) and racial minority (Asian, Native American, Pacific Islander, other race) caregivers (p = .004) had significantly lower family quality of life. Those with incomes over $50,000 had significantly higher levels of family quality of life compared with those earning less than $50,000 (p < .001). Compared with those reporting a high school education or some college, caregivers with at least a college degree had significantly higher levels of family quality of life (p < .001). Compared with spousal caregivers, caregivers who were the child (p < .001) or other relative or friend (p = .001) of the person with ADRD had significantly lower levels of family quality of life. Caregivers’ partner status was not a significant predictor of family quality of life.

Table 3.

Caregiver characteristics associated with family quality of life.

Predictor	B	Standard Error	β	p-value
Sexual orientation
Sexual minority	16.28	4.70	0.27	0.001
Heterosexual	ref
Age (years)	−0.28	0.14	−0.16	0.039
Race
African American/Black	−6.99	3.53	−0.09	0.048
Asian/AIAN/PIHN/Other race	−13.33	4.57	−0.13	0.004
White	ref
Ethnicity
Latinx/Hispanic	−4.78	3.16	−0.73	0.131
Non-Latinx/Hispanic	ref
Income
≥$50,000	10.30	2.62	0.18	<0.001
<$50,000	ref
Education
≥College	14.13	2.53	0.25	<0.001
<College	ref
Marital/Partner status
Married/Partnered	2.81	3.26	0.05	0.388
Separated/Divorced/Widowed	−4.84	4.46	−0.06	0.279
Never married	ref
Relationship to care recipient
Child	−12.51	3.26	−0.20	<0.001
Other relative/Friend	−11.39	3.40	−0.17	0.001
Spouse/Partner	ref

Note. AIAN = American Indian/Alaska Native; PIHN = Pacific Islander/Hawaiian Native.

Discussion

We set out to describe family quality of life in a sample of SM and heterosexual caregivers providing care for people with ADRD, and to compare family quality of life by sexual orientation. SM caregivers in our sample were demographically similar to those providing care in population-based samples. SM caregivers in our sample were younger and more ethnically diverse than the heterosexual caregivers. This is consonant with findings from Boehmer et al. (2019). Using data from a representative, population-based sample of caregivers, SM caregivers in their sample also were significantly younger and more ethnically diverse than heterosexual caregivers. However, the SM caregivers in our sample were less racially diverse than those in Boehmer’s and colleagues (2019). Similar to findings from Anderson and Flatt (2018) and Boehmer et al. (2019), a larger proportion of SM caregivers in our sample also reported financial strain than heterosexual caregivers. Among SM caregivers, 35.2% experienced somewhat difficult or very difficult conditions for paying for everyday basics compared with 28% of heterosexual caregivers, a 20% difference in difficulty. Additionally, a larger proportion of SM caregivers in our sample were not living with the person with memory loss (57.5%) compared with the heterosexual caregivers (49%).

With respect to family quality of life, bivariate analyses indicated differences in family quality of life, with queer and lesbian SM people reporting the lowest average family quality of life in the sample for the total scale and each of the four domains. Yet, multivariable analyses indicated that SM adults have on average significantly higher family quality of life total scores versus heterosexual caregivers.

Family quality of life is an indicator of the quality of well-being in a family that accounts for both individual and family experiences. The Family Quality of Life in Dementia scale assesses family interactions, well-being, disease-related support/medical care, and caregiver support (Rose et al., 2020). Ours is a curious finding, that SM caregivers had higher family quality of life total scores in our multivariable analyses, given what is known about the strain of caregiving and the documented experiences of SM caregivers. One possible explanation is that our sample composition and characteristics could be influencing our findings. Our SM sample was not equally the same size across gay, lesbian, bisexual, and queer subgroups. The largest sub-group of SM caregivers in our sample was comprised of gay men (n = 123). These caregivers also reported the highest incomes (58% reporting ≥ $60,000 annual income), the least amount of difficulty paying for everyday basics, and the highest average family quality of life score (156.1), the same as heterosexual caregivers and 3–27 points higher than other SM subgroups. Gay caregivers also scored higher on each of the four domains of the scale: caregiver support, disease-related support/medical care, family interactions, and well-being. It is possible that taken in concert in the multivariable analyses, these conditions produced the elevated family quality of life score relative to heterosexual caregivers. It is also possible that this finding underscores the benefits of having financial resources in the form of income and absence of financial strain could contribute to family quality of life.

When considered from an economic and financial perspective, several of the family quality of life items could be influenced by the presence of economic stability. For example, “my family has the support needed to manage our feelings,” “my family members have some time to pursue their own interests,” “my family has outside help available to us to take care of special needs of all family members,” and “as a caregiver I have uninterrupted time at work” are all items that could be enhanced in the presence of high income and ability to meet day-to-day needs. The benefits of income may come in the form of the ability to pay for activities, outside support, and resources that allow individuals to manage feelings. However, it may not just be the presence of financial resources. Family quality of life may also be improved because having necessary financial resources may increase available time and reduce the mental and emotional strain experienced by the caregivers, thereby leaving more physical energy, mental capacity, and time to engage in activities that improve family quality of life.

A second possible explanation of our finding is that caregiving has a beneficial effect on family quality of life. Roth et al. (2015) reappraised the impact of caregiving on health and quality of life using population-based data sources and reported five studies found that caregiving was associated with reduced mortality and extended longevity for caregivers; caregivers reported benefits and no caregiving-related strain. It may be possible that the SM caregivers in this sample saw higher family quality of life in multivariable analyses because of the benefits provided through caregiving.

To our knowledge, ours is the first to explore potential differences in family quality of life between caregivers who may rely on biological family versus those who may rely on families of choice. Family expectations are associated with greater levels of burden among older SM caregivers (Shippy, 2007). Among SM caregivers, families of choice are common caregivers (Anderson & Flatt, 2018; Fredriksen-Goldsen & Kim, 2017) and formed in response to historical discrimination and stigma and/or lack of biological family support. According to the National Health, Aging, and Sexuality/Gender Study (Shiu et al., 2016), 44% of SM caregivers overall cared for a friend and reported decreased social support, increasing their risk of experiencing higher caregiver strain and negative health outcomes. Among SM caregivers for someone with ADRD, a quarter identified themselves as caring for a friend or other relative (Anderson et al., 2021). This reliance on families of choice has significant research, practice, and policy implications given that the majority of research regarding caregivers of people with ADRD, as well as the interventions and services designed to address psychosocial outcomes for caregivers, center around caregivers who are the spouse/partner or child of the person with ADRD. Health care providers and service organizations can support SM caregivers and their care recipients by acknowledging an expanded definition of family and using SM-affirming language, collecting information from patients and caregivers regarding sexual orientation and gender identity (including non-binary terms), engaging in cultural competency training with an eye toward cultural humility, and ensuring recommendations for respite and caregiver services are inclusive of SM caregivers and people with ADRD (SAGE & Alzheimer’s Association, 2018). It also is important for health care and service providers to recognize that SM caregivers are not a monolith, as lesbian, gay, bisexual, and queer caregivers have unique within-group caregiving experiences and needs, as evidenced by the current findings.

This project has several limitations. The samples of the original studies were convenience samples, which may limit generalizability. Although in the combined SM caregiver sample there was large enough sample size for statistical analyses, the samples across SM identities were relatively small and did not allow for more rigorous comparisons across SM identities as prescribed by the Institute of Medicine report (2011). Data regarding ADRD severity, number of months in the caregiving role, functional limitations, and mental health were not collected in the original study of heterosexual caregivers, limiting inclusion of these variables for the current analysis. Variables regarding the quality of the relationship between the caregiver and person with ADRD were not collected in either sample. Those data could have added to our understanding of family quality of life. As noted in the methods, transgender-inclusive gender identity was not addressed during the data collection among the heterosexual caregivers. Yet transgender, gender diverse, or non-binary people who are caregivers represent an extremely understudied group for which there are known health disparities, warranting further research. Our analyses were not stratified by sex given the sample size. It is possible that female caregivers may experience/report different outcomes and have different needs than male caregivers. Exploration of the impact of stereotypical gender roles is an important area for future research given that gender associated with greater levels of burden among older SM caregivers (Shippy, 2007). However, despite these limitations, the present study makes use of data from two studies with empirical, cross-sectional designs involving prospective primary data collection, one of which focused on an understudied population (i.e., SM caregivers).

This project is among the first to investigate and describe family quality of life among SM caregivers and compare them to heterosexual caregivers. This is important because it provides much-needed information about the demographic and lived experiences of SM caregivers, including family quality of life. This information should be applied to future intervention development and testing for improving health and quality of life for SM caregivers. Additionally, we need more rigorous research that explores and documents the experiences of SM caregivers and the role of caregiving on family quality of life.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the Commonwealth of Virginia Alzheimer’s Disease and Related Dementias Award Fund (ICW, KMR); the Office of Nursing Research at the University of Virginia (JGA, ICW, KMR); an intramural award from the Office of Research Services in the College of Nursing at the University of Tennessee-Knoxville (JGA); and by the National Institute on Aging of the National Institutes of Health under award number 1R03AG058528-01A1 (JGA). Dr. Gross was supported by K01AG050699 from the National Institute on Aging. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

IRB Approval

Institutional Review Board Approval Was Obtained (UTK, #19-04926-XP; UVA, #14290) prior to initiating this study.

ORCID iDs

Joel G. Anderson

Ishan C. Williams

Karen M. Rose

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