Scoping Literature Review: Experiences of Sexual and Gender Minority Older Adults,With Diagnoses of Dementia,Who Use Residential Long-Term Services and Supports

Abstract

The number of sexual and gender minority (SGM) older adults utilizing residential long-term supports and services (LTSS) will increase in the forthcoming decades. Paradoxically, while requiring more LTSS services than their non-SGM counterparts, SGM older adults are less likely to access these services, partly due to fears of discrimination. Furthermore, SGM older adults living with Alzheimer’s disease and related dementias (AD/ADRD) present unique challenges and opportunities for LTSS facilities. This article provides a scoping review on the intersection between experiences of SGM older adults with AD/ADRD who use residential LTSS. This review identified three themes: (1) the experiences of discrimination among SGM residents in LTSS facilities, (2) the need for comprehensive staff training in residential LTSS to ensure proper care of SGM populations, and (3) the crucial role of inclusive facility policies. As the number of SGM older adults is expected to increase, further research is necessary.

Keywords

long-term services and supports Lesbian,Gay,Bisexual,Transgender,and Queer Alzheimer’s disease policy dementia

Get full access to this article

View all access options for this article.

References

Alzheimer's Association . (2020). Issues brief: LGBT and dementia. Available from: https://www.alz.org/media/documents/lgbt-dementia-issues-brief.pdf

Archibald

(1998). Sexuality, dementia and residential care: Managers report and response. Health and Social Care in the Community, 6(2), 95–101. https://doi.org/10.1046/j.1365-2524.1998.00104.x

Austin

E. L.

(2013). Sexual orientation disclosure to health care providers among urban and non-urban southern lesbians. Women and Health, 53(1), 41–55. https://doi.org/10.1080/03630242.2012.743497

Barrett

Crameri

Lambourne

Latham

J. R.

Whyte

(2015). Understanding the experiences and needs of lesbian, gay, bisexual and trans Australians living with dementia, and their partners. Australasian Journal on Ageing, 34(Suppl 2), 34–38. https://doi.org/10.1111/ajag.12271

Bauer

McAuliffe

Nay

Chenco

(2013). Sexuality in Older Adults: Effect of an Education Intervention on Attitudes and Beliefs of Residential Aged Care Staff. Educational Gerontology, 39(2), 82–91. https://doi.org/10.1080/03601277.2012.682953

Bell

S. A.

Bern-Klug

Kramer

K. W.

Saunders

J. B.

(2010). Most nursing home social service directors lack training in working with lesbian, gay, and bisexual residents. Social Work in Health Care, 49(9),814–831. https://doi.org/10.1080/00981389.2010.494561

Butler

S. S.

Hope

(1999). Health and well-being for late middle-aged and old lesbians in a rural area. Journal of Gay and Lesbian Social Services, 9(4), 27–46. https://doi.org/10.1300/J041v09n04_02

Caceres

B. A.

Travers

Primiano

J. E.

Luscombe

R. E.

Dorsen

(2020). Provider and LGBT individuals’ perspectives on LGBT issues in long-term care: A systematic review. The Gerontologist, 60(3), Article e169–e183. https://doi.org/10.1093/geront/gnz012

Cahill

(2004). Same-sex marriage in the United States: Focus on the facts (pp. 65–66). Lexington.

10.

Celdrán

Villar

Serrat

Fabà

Martínez

(2018). Policies Regarding Sexual Expression in Spanish Long‐Term Care Facilities for Older People. Journal of the American Geriatrics Society (JAGS), 66(5), 1044–1045. https://doi.org/10.1111/jgs.15345

11.

Diverse Elders Coalition . (2017). Aging with health and dignity: Diverse elders speak up 2017. Diverse Elders Coalition. [cited 2022 November 30]. Available from: http://www.diverseelders.org/wp-content/uploads/2017/02/Aging-with-Health-and-Dignity-WEB-FINAL.pdf

12.

Doll

(2013). Sexuality in nursing homes: Practice and policy. Journal of Gerontological Nursing, 39(7), 30–37. https://doi.org/10.3928/00989134-20130418-01

13.

Donaldson

Asta

Vacha-Haase

(2014). Attitudes of heterosexual assisted living residents toward gay and lesbian peers. Clinical Gerontologist, 37(2), 167–189. https://doi.org/10.1080/07317115.2013.868849

14.

Dragon

C. N.

Guerino

Ewald

Laffan

A. M.

(2017). Transgender Medicare beneficiaries and chronic conditions: Exploring fee-for-service claims data. LGBT Health, 4(6), 404–411. https://doi.org/10.1089/lgbt.2016.0208

15.

Duffy

Healy

J. P.

(2014). A social work practice reflection on issues arising for LGBTI older people interfacing with health and residential care: Rights, decision-making, and end-of-life care. Social Work in Health Care, 53(6), 568–583. https://doi.org/10.1080/00981389.2014.914119

16.

Flatt

(2020). The epidemiology of Alzheimer’s disease and related dementias in sexual and gender minority older adults: Identifying risk and protective factors (Grant # 7 K01AG056669-03). National Institute of Aging.

17.

Flatt

Cicero

Lambrou

N. H.

Wharton

Anderson

J. G.

(2019). O4-07-04: Subjective cognitive decline higher among sexual and gender minorities: Population-based findings from nine states in the US. Alzheimer’s and Dementia, 15(7S_Part_24), P1250. https://doi.org/10.1016/j.jalz.2019.06.4779

18.

Flatt

Johnson

Mack

Gilsanz

Albers

Whitmer

R. A.

(2018). P1-619: Dementia prevalence among sexual minority older adults. Alzheimer's and Dementia, 14(7S 10)), P577–P578, https://doi.org/10.1016/j.jalz.2018.06.632

19.

Flatt

J. D.

Cicero

E. C.

Kittle

K. R.

Brennan-Ing

(2022). Recommendations for advancing research with sexual and gender minority older adults. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 77(1), 1–9. https://doi.org/10.1093/geronb/gbab127

20.

Fredriksen-Goldsen

K. I.

(2016). The future of LGBT+ aging: A blueprint for action in services, policies, and research. Generations, 40(2), 6–15.

21.

Fredriksen-Goldsen

K. I.

Jen

Bryan

A. E.

Goldsen

(2018). Cognitive impairment, Alzheimer’s disease, and other dementias in the lives of lesbian, gay, bisexual and transgender (LGBT) older adults and their caregivers: Needs and competencies. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 37(5), 545–569. https://doi.org/10.1177/0733464816672047

22.

Fredriksen-Goldsen

K. I.

Kim

H. J.

(2017). The science of conducting research with LGBT older adults- an introduction to aging with pride: National health, aging, and sexuality/gender study (NHAS). The Gerontologist, 57(suppl 1), S1–S14. https://doi.org/10.1093/geront/gnw212

23.

Gallup . (2022). LGBT rights. In Depth: Topics A to Z. Gallup. https://news.gallup.com/poll/1651/gay-lesbian-rights.aspx (Accessed 30 November 2022)

24.

Gallup . (2023). U.S. LGBT Identification Steady at 7.2%. https://news.gallup.com/poll/470708/lgbt-identification-steady.aspx (Accessed 06 June 2023)

25.

Henning-Smith

Gonzales

Shippee

T. P.

(2015). Differences by sexual orientation in expectations about future long-term care needs among adults 40 to 65 Years old. American Journal of Public Health, 105(11), 2359–2365. https://doi.org/10.2105/AJPH.2015.302781

26.

Hsieh

Liu

Lai

W.-H.

(2020). Elevated risk of cognitive impairment among older sexual minorities: Do health conditions, health behaviors, and social connections matter? The Gerontologist, 61(3), 352–362. https://doi.org/10.1093/geront/gnaa136

27.

Knauer Nancy

, LGBT Elder Law: Toward Equity in Aging (December 4, 2008). Harvard Journal of Law and Gender, Vol. 32, 2009, Temple University Legal Studies Research Paper No. 2009-9, Available at SSRN: https://ssrn.com/abstract=1309182

28.

Knochel

K. A.

Croghan

C. F.

Moone

R. P.

Quam

J. K.

(2012). Training, geography, and provision of aging services to lesbian, gay, bisexual, and transgender older adults. Journal of Gerontological Social Work, 55(5), 426–443. https://doi.org/10.1080/01634372.2012.665158

29.

Knochel

K. A.

Flunker

(2021). Long-Term Care Expectations and Plans of Transgender and Nonbinary Older Adults. Journal of Applied Gerontology, 40(11), 1542–1550. https://doi.org/10.1177/0733464821992919

30.

Kortes-Miller

Boulé

Wilson

Stinchcombe

(2018). Dying in long-term care: Perspectives from sexual and gender minority older adults about their fears and hopes for end of life. Journal of Social Work in End-of-Life and Palliative Care, 14(2-3), 209–224. https://doi.org/10.1080/15524256.2018.1487364

31.

Krishnakumar

Cole

(2022). 2022 is already a record year for state bills seeking to curtail LGBTQ rights, ACLU data shows. CNN.https://www.cnn.com/2022/07/17/politics/state-legislation-lgbtq-rights/index.html (Accessed 16 December 2022).

32.

Lee

M. G.

Quam

J. K.

(2013). Comparing supports for LGBT aging in rural versus urban areas. Journal of Gerontological Social Work, 56(2), 112–126. https://doi.org/10.1080/01634372.2012.747580

33.

Liu

Hsieh

Zhang

Langa

K. M.

(2020). Same-sex couples and cognitive impairment: Evidence from the health and retirement study. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 76(7), 1388–1399. https://doi.org/10.1093/geronb/gbaa202

34.

Marshall

Cooper

Rudnick

(2015). Gender Dysphoria and Dementia: A Case Report. Journal of Gay & Lesbian Mental Health, 19(1), 112–117. https://doi.org/10.1080/19359705.2014.974475

35.

McLeroy

K. R.

Bibeau

Steckler

Glanz

(1988). An ecological perspective on health promotion programs. Health Education Quarterly, 15(4), 351–377. https://doi.org/10.1177/109019818801500401

36.

McParland

Camic

P. M.

(2018). How do lesbian and gay people experience dementia? Dementia (London, England), 17(4), 452–477. https://doi.org/10.1177/1471301216648471

37.

Perales-Puchalt

Gauthreaux

Flatt

Teylan

M. A.

Resendez

Kukull

W. A.

Chan

K. C.

Burns

Vidoni

E. D.

(2019). Risk of dementia and mild cognitive impairment among older adults in same-sex relationships. International Journal of Geriatric Psychiatry, 34(6), 828–835. PMCID: PMC6502266. https://doi.org/10.1002/gps.5092

38.

Pereira

de Vries

Serrano

J. P.

Afonso

R. M.

Esgalhado

Monteiro

(2020). Depression and Quality of Life in Older Gay and Bisexual Men in Spain and Portugal. International Journal of Aging & Human Development, 91(2), 198–213. https://doi.org/10.1177/0091415019864600

39.

Price

(2012). Gay and lesbian carers: ageing in the shadow of dementia. Ageing and Society, 32(3), 516–532. https://doi.org/10.1017/S0144686X11000560

40.

Putney

J. M.

Keary

Hebert

Krinsky

Halmo

(2018). Fear runs deep:" the anticipated needs of LGBT older adults in long-term care. Journal of Gerontological Social Work, 61(8), 887–907. https://doi.org/10.1080/01634372.2018.1508109

41.

Reisner

S. L.

Pardo

S. T.

Gamarel

K. E.

White Hughto

J. M.

Pardee

D. J.

Keo-Meier

C. L.

(2015). Substance use to cope with stigma in healthcare among U.S. Female-to-Male trans masculine adults. LGBT Health, 2(4), 324–332. https://doi.org/10.1089/lgbt.2015.0001

42.

Ring

(2018, August 31). The briggs initiative: remembering a crucial moment in gay history. The Advocate. https://www.advocate.com/politics/2018/8/31/briggs-initiative-remembering-crucial-moment-gay-history (Accessed 16 December 2022).

43.

Rodgers

Radcliffe

(2023, May 25). Over 100 anti-LGBTQ+ laws passed in the last five years - half of them this year. FiveThirtyEight. https://fivethirtyeight.com/features/anti-lgbtq-laws-red-states/

44.

Rood

B. A.

Reisner

S. L.

Surace

F. I.

Puckett

J. A.

Maroney

M. R.

Pantalone

D. W.

(2016). Expecting rejection: Understanding the minority stress experiences of transgender and gender-nonconforming individuals. Transgender health, 1(1), 151–164. https://doi.org/10.1089/trgh.2016.0012

45.

Rosenfeld

Bartlam

Smith

R. D.

(2012). Out of the closet and into the trenches: Gay male Baby Boomers, aging, and HIV/AIDS. The Gerontologist, 52(2), 255–264. https://doi.org/10.1093/geront/gnr138

46.

Rosenwohl-Mack

Tamar-Mattis

Baratz

A. B.

Dalke

K. B.

Ittelson

Zieselman

Flatt

J. D.

(2020). A national study on the physical and mental health of intersex adults in the US. PLoS One, 15(10), Article e0240088. PMCID: PMC7546494. https://doi.org/10.1371/journal.pone.0240088

47.

Rosser

B. R. S.

Shippee

Wright

M. M.

Aumock

Moone

Talley

K. M. C.

Duran

Henning-Smith

Cahill

Flatt

J. D.

Slaughter-Acey

Greenwald

McCarthy

Ross

M. W.

(2023). Going Back in the Closet”: Addressing Discrimination Against Sexual and Gender Minority Residents in Long-Term Services and Supports by Providing Culturally Responsive Care. Journal of Aging & Social Policy, ahead-of-print(ahead-of-print), 1–13. https://doi.org/10.1080/08959420.2023.2226300

48.

Seelman

K. L.

(2019). Differences in Mental, Cognitive, and Functional Health by Sexual Orientation Among Older Women: Analysis of the 2015 Behavioral Risk Factor Surveillance System. The Gerontologist, 59(4), 749–759. https://doi.org/10.1093/geront/gnx215

49.

Sexual and Gender Minority Research Office, National Institutes of Health . (2022). https://dpcpsi.nih.gov/sgmro#:∼:text=Sexual_and_gender_minority_(SGM)_populations_include%2C_but_are,sex_development_are_also_included

50.

Simpson

Brown Wilson

Brown

L. J. E.

Dickinson

Horne

(2017). The challenges and opportunities in researching intimacy and sexuality in care homes accommodating older people: a feasibility study. Journal of Advanced Nursing, 73(1), 127–137. https://doi.org/10.1111/jan.13080

51.

Smith

Wright

(2021). Older lesbian, gay, bisexual, transgender, queer, and intersex peoples’ experiences and perceptions of receiving home care services in the community: A systematic review. International Journal of Nursing Studies, 118, 103907. https://doi.org/10.1016/j.ijnurstu.2021.103907

52.

Teo

Churchill

Riadi

Kervin

Wister

Cosco

(2022). Help-Seeking behaviors among older adults: A scoping review. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 41(5), 1500–1510. https://doi.org/10.1177/07334648211067710

53.

Travers

J. L.

Shippee

T. P.

Flatt

J. D.

Caceres

B. A.

(2022). Functional limitations and access to long-term services and supports among sexual minority older adults. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 41(9), 2056–2062. https://doi.org/10.1177/07334648221099006

54.

Villar

Serrat

Fabà

Celdrán

(2015). Staff reactions toward lesbian, gay, or bisexual (LGB) people living in residential aged care facilities (RACFs) who actively disclose their sexual orientation. Journal of Homosexuality, 62(8), 1126–1143. https://doi.org/10.1080/00918369.2015.1021637

55.

Visser

Borgstrom

Holti

(2021). The overlap between geriatric medicine and palliative care: A scoping literature review. Journal of Applied Gerontology: The Official Journal of the Southern Gerontological Society, 40(4), 355–364. https://doi.org/10.1177/0733464820902303

56.

Ward

(2000). Waiting to be Heard: Dementia and the Gay Community, Journal of Dementia Care. Journal of Dementia Care, 8(3).

57.

Ward

Vass

A. A.

Aggarwal

Garfield

Cybyk

(2005). A kiss is still a kiss? The construction of sexuality in dementia care. Dementia, 4(1), 49–72. https://doi.org/10.1177/1471301205049190

58.

Wardecker

Johnston

(2018). Seeing and supporting LGBT older adults’ caregivers and families. Journal of Gerontological Nursing, 44(11), 2–4. https://doi.org/10.3928/00989134-20181010-01

59.

Westwood

(2016). Dementia, women and sexuality: How the intersection of ageing, gender and sexuality magnify dementia concerns among lesbian and bisexual women. Dementia, 15(6), 1494–1514. https://doi.org/10.1177/1471301214564446

60.

Willis

Maegusuku-Hewett

Raithby

Miles

(2016). Swimming upstream: The provision of inclusive care to older lesbian, gay and bisexual (LGB) adults in residential and nursing environments in wales. Ageing and Society, 36(2), 282–306. https://doi.org/10.1017/S0144686X14001147

61.

Witten

(2015). Elder transgender lesbians: Exploring the intersection of age, lesbian sexual identity, and transgender identity. Journal of Lesbian Studies, 19(1), 73–89. https://doi.org/10.1080/10894160.2015.959876

62.

Yurcaba

(2022). After ‘Don't Say Gay’ bill passed, anti-LGBTQ ‘grooming’ rhetoric surged 400% online. NBC News. https://www.nbcnews.com/nbc-out/out-news/-dont-say-gay-bill-passed-lgbtq-online-hate-surged-400-rcna42617 (Accessed 16 December 2022).