This scoping review aimed to synthesize research on the health experiences of LGBTQ+ people living with dementia (PLWD) and their caregivers, and the impact of health policies on this population.
Methods
Six databases were searched for research studies and policy literature. Titles, abstracts, and full texts were reviewed by a three-member team. Data was extracted and thematically analyzed. Feedback from 7 LGBTQ+ adults was collected through a community consultation session.
Results
A total of 9257 unique research and 945 policy citations were identified, of which 60 research and 19 policy papers were reviewed. Nine research studies and ten policy papers met eligibility criteria. Themes emerged through the analysis of research findings, the community listening session, and policy findings.
Discussion
Future work needs to disentangle the impact of policies on the health experiences of this population. Dementia-specific and LGBTQ+ inclusive services and policies are needed to address growing health disparities.
AndersonJ. G.FlattJ. D.Jabson TreeJ. M.GrossA. L.RoseK. M. (2021). Characteristics of sexual and gender minority caregivers of people with dementia. Journal of Aging and Health, 33(10), 838–851. https://doi.org/10.1177/08982643211014767
2.
AndersonJ. G.Jabson TreeJ. M.FlattJ. D.GrossA. L.WilliamsI. C.RoseK. M. (2022). A comparative analysis of family quality of life between heterosexual and sexual minority caregivers of people with dementia. Journal of Applied Gerontology, 41(6), 1576–1584. https://doi.org/10.1177/07334648221079496
3.
BarrettC.CrameriP.LambourneS.LathamJ. R.WhyteC. (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
4.
CandrianC.BurkeE. S.KlineD.TorkeA. M. (2023). Experiences of caregiving with Alzheimer’s disease in the LGBT community. BMC Geriatrics, 23(1), 293. https://doi.org/10.1186/s12877-023-03914-1
CoxL. E.DunkleJ.SeelC. (2023). Implementing legislative policy intervention into long-term care practice settings. Research on Social Work Practice, 33(6), 679–685. https://doi.org/10.1177/10497315221147888
8.
DicksonL.BuntingS.NannaA.TaylorM.SpencerM.HeinL. (2022). Older lesbian, gay, bisexual, transgender, and queer adults’ experiences with discrimination and impacts on expectations for long-term care: Results of a survey in the southern United States. Journal of Applied Gerontology, 41(3), 650–660. https://doi.org/10.1177/07334648211048189
9.
DrabbleL. A.EliasonM. J. (2021). Introduction to special issue: Impacts of the COVID-19 pandemic on LGBTQ+ health and well-being. Journal of Homosexuality, 68(4), 545–559. https://doi.org/10.1080/00918369.2020.1868182
Fredriksen-GoldsenK. I.KimH.-J.BarkanS. E.MuracoA.Hoy-EllisC. P. (2013). Health disparities among lesbian, gay, and bisexual older adults: Results from a population-based study. American Journal of Public Health, 103(10), 1802–1809. https://doi.org/10.2105/AJPH.2012.301110
13.
GoldsenJ.BryanA. E. B.KimH.-J.MuracoA.JenS.Fredriksen-GoldsenK. I. (2017). Who says I do: The changing context of marriage and health and quality of life for LGBT older adults. The Gerontologist, 57(Suppl 1), S50–S62. https://doi.org/10.1093/geront/gnw174
14.
HildebrandtT. (2018). The one-child policy, elder care, and LGB Chinese: A social policy explanation for family pressure. Journal of Homosexuality, 66(5), 590–608. https://doi.org/10.1080/00918369.2017.1422946
15.
HudsonB.HunterD.PeckhamS. (2019). Policy failure and the policy-implementation gap: Can policy support programs help?Policy Design and Practice, 2(1), 1–14. https://doi.org/10.1080/25741292.2018.1540378
16.
JonesG.GahaganJ. (2015). Migration, integration and health for aging LGBTQ2 populations in the EU: A strengths-based approach to policy. International Archives of Medicine, 8(1), 1–10. https://doi.org/10.3823/1633
17.
KinneyM. K.PearsonT. E.Ralston AokiJ. (2022). Improving “Life Chances”: Surveying the anti-transgender backlash, and offering a transgender equity impact assessment tool for policy analysis. Journal of Law Medicine & Ethics, 50(3), 489–508. https://doi.org/10.1017/jme.2022.89
18.
KrinskyL.CahillS. R. (2017). Advancing LGBT elder policy and support services: The Massachusetts Model. LGBT Health, 4(6), 394–397. https://doi.org/10.1089/lgbt.2016.0184
19.
LevacD.ColquhounH.O’BrienK. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. https://doi.org/10.1186/1748-5908-5-69
20.
MayJ. T.HarrisM. L. (2023). Health experiences of sexual and gender minority people living with dementia and their care partners: Protocol for a scoping review. JMIR Research Protocols, 12(1), e44918. https://doi.org/10.2196/44918
21.
McGowanJ.SampsonM.SalzwedelD. M.CogoE.FoersterV.LefebvreC. (2016). PRESS peer review of electronic search strategies: 2015 guideline statement. Journal of Clinical Epidemiology, 75(1), 40–46. https://doi.org/10.1016/j.jclinepi.2016.01.021
McPhailR.FulopL. (2016). Champions' perspectives on implementing the national lesbian, gay, bisexual, transgender and intersex ageing and aged care strategy in Queensland. Australian Health Review, 40(6), 633–640. https://doi.org/10.1071/AH15185
24.
MoutselosK.MaglogiannisI. (2020). Evidence-based public health policy models development and evaluation using big data analytics and web technologies. Medical Archives, 74(1), 47–53. https://doi.org/10.5455/medarh.2020.74.47-53
25.
National Academies of Sciences, E., & Medicine. (2020). Understanding the well-being of LGBTQI+ populations. The National Academies Press. https://doi.org/10.17226/25877
26.
NelsonC. L.WardeckerB. M.AndelR. (2023). Sexual orientation and gender identity-related state-level policies and perceived health among lesbian, gay, bisexual, and transgender (LGBT) older adults in the United States. Journal of Aging and Health, 35(3-4), 155–167. https://doi.org/10.1177/08982643221116762
27.
O’ConnorD.PhinneyA.HulkoW. (2010). Dementia at the intersections: A unique case study exploring social location. Journal of Aging Studies, 24(1), 30–39. https://doi.org/10.1016/j.jaging.2008.08.001
28.
OhA.AbazeedA.ChambersD. A. (2021). Policy implementation science to advance population health: The potential for learning health policy systems. Frontiers in Public Health, 9, 681602. https://doi.org/10.3389/fpubh.2021.681602
29.
Older Americans Act of 1965, Public Law 89–73, 79 Stat. 218 (1965), as amended by the Supporting Older Americans Act of 2020. (2020). Public law 116–131, 134 stat, 240. Older Americans Act. https://www.congress.gov/116/plaws/publ131/PLAW-116publ131.pdf
30.
PeelE.TaylorH.HardingR. (2016). Sociolegal and practice implications of caring for LGBT people with dementia. Nursing Older People, 28(10), 26–30. https://doi.org/10.7748/nop.2016.e852
31.
PetersM.GodfreyC.McInerneyP.MunnZ.TricoA.KhalilH. (2020). Chapter 11: Scoping reviews. In AromatarisE.MunnZ. (Eds.), JBI manual for evidence synthesis. Refined. https://doi.org/10.46658/JBIMES-20-12
32.
PriceE. (2010). Coming out to care: Gay and lesbian carers’ experiences of dementia services. Health and Social Care in the Community, 18(2), 160–168. https://doi.org/10.1111/j.1365-2524.2009.00884.x
RogersH. L.Pablo HernandoS.Núñez-FernándezS.SanchezA.MartosC.MorenoM.GrandesG. (2021). Barriers and facilitators in the implementation of an evidence-based health promotion intervention in a primary care setting: A qualitative study. Journal of Health, Organisation and Management, ahead-of-print(ahead-of-print), 349–367. https://doi.org/10.1108/jhom-12-2020-0512
35.
RosaW. E.BanerjeeS. C.MaingiS. (2022). Family caregiver inclusion is not a level playing field: Toward equity for the chosen families of sexual and gender minority patients. (Vol. 16, p. 26323524221092459). Sage Publications. https://doi.org/10.1177/26323524221092459
SilvermanM.BarilA. (2023). “We have to advocate so hard for ourselves and our people”: Caring for a trans or non-binary older adult with dementia. LGBTQ+ Family: An Interdisciplinary Journal, 19(3), 187–210. https://doi.org/10.1080/27703371.2023.2169215
38.
SmithL.ChesherI.Fredriksen-GoldsenK.WardR.PhillipsonL.NewmanC. E.DelhommeF. (2024). Investigating the lived experience of LGBT+ people with dementia and their care partners: A scoping review. Ageing and Society, 44(4), 843–866. https://doi.org/10.1017/S0144686X22000538
39.
TriccoA.LillieE.ZarinW.O'BrienK.ColquhounH.LevacD.MoherD.PetersM.HorsleyT.WeeksL.HempelS. (2018). PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850
40.
WespL. M.MalcoeL. H.ElliottA.PoteatT. (2019). Intersectionality research for transgender health justice: A theory-driven conceptual framework for structural analysis of transgender health inequities. Transgender Health, 4(1), 287–296. https://doi.org/10.1089/trgh.2019.0039
41.
ZanetosJ. M.SkipperA. W. (2020). The effects of health care policies: LGBTQ aging adults. Journal of Gerontological Nursing, 46(3), 9–13. https://doi.org/10.3928/00989134-20200203-02
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
