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Title [sv]
HBTQ och demens i policy och praktik inom svensk demensomsorg
Title [en]
LGBTQ and dementia in policy and practice in Swedish dementia care
Abstract [sv]
Omkring 50 miljoner människor i världen lever med en demenssjukdom. Vård och omsorg av personer med demenssjukdomar är en av samhällets stora utmaningar och ett viktigt område för forskningen. Omsorgsbehov innebär situationer där det inte alltid är möjligt att själv välja vem som ska finnas i ens hem eller närhet, eller kontakt med den egna kroppen. För HBTQ-personer kan detta innebära en upplevelse av utsatthet och rädsla för diskriminering och negativ särbehandling. HBTQ-personer som lever med en demenssjukdom är en speciellt sårbar grupp som kan ha speciellt svårt att upprätthålla den egna identitet och hävda sina rättigheter i möte med vård och omsorg. Idag saknas det dock forskning om hur denna grupp samt deras anhöriga upplever mötet med vård och omsorg och hur kön och sexualitet som kommer till uttryck i demensomsorgen.Syftet med denna studie är därför att undersöka HBTQ-personers erfarenheter och livssituation inom svensk demensomsorg, både utifrån ett policyperspektiv och genom att studera erfarenheter bland HBTQ-personer med demens, deras anhöriga samt vård-och omsorgspersonal i demensomsorgen.Projektet bygger på två delstudier. Delstudie 1 fokuserar på policynivå och undersöker hur HBTQ-personer och normer om kön och sexualitet representeras i policy, lagstiftning och riktlinjer inom svensk äldre- och demensomsorg. Delstudie 2 bygger på kvalitativa intervjuer med HBTQ-personer med demenssjukdom och deras anhöriga samt chefer och personal inom demensomsorgen.Studien är ett unikt bidrag till forskning om demensomsorg som i dagsläget inte studerat HBTQ-personer med demens beroende av formell omsorg. Kunskaper från studien kan användas i framtida policys och riklinjer för demensomsorgen och leda till konkret nytta genom förbättrad vård- och omsorgspraktik, vilket kan leda till förbättrad hälsa och livskvalitet för HBTQ-personer med demenssjukdom och deras anhöriga.
Abstract [en]
Across the globe 50 million people are estimated to live with a dementia illness. Dementia care is one of the greatest societal challenges ahead and a significant area for future research.Care needs implies situations were one may not choose who enters one´s home or who is in contact with one´s body. For LGBTQ people experiences of formal care may thus be experienced as a vulnerable situation, in particular due to fear of discrimination. LGBTQ people living with dementia may be particularly vulnerable group and face particular challenges to maintain their identities and claim their rights when receiving formal care, both due to illness and the particular forms of dependency that being in care entails. Currently however there is a lack of research on how LGBTQ people with dementia and their significant others experience formal dementia care and how norms on gender and sexuality are expressed in dementia care. Thus, the aim of this study is to explore experiences of and conditions for LGBTQ people with dementia within formal dementia care in Sweden, both on the level of policy and from the perspectives of LGBTQ people with dementia their significant others, and professionals within dementia care. The project builds on two substudies. The first one focus on the level of policy and investigates how norms on gender and sexuality is represented in policy, legislation and guidelines within Swedish elder and dementia care. Substudy 2 builds on qualitative interviews with LGBTQ people with dementia, people significant to them such as partners, family and friends, and interviews with frontline care staff and managers within dementia care. The study is a unique contribution to research where currently there is a lack of research on LGBTQ people with dementia in need of formal care. Findings from the study may be used both in future policy-making and to improve care practice, which may increase the health and wellbeing of people with dementia and their significant others.
Publications (2 of 2) Show all publications
Siverskog, A. & Sandberg, L. (2025). Gender Identity, Sexuality, and LGBTI Perspectives in Swedish Dementia Care Policies. Journal of gerontological social work, 68(7), 956-977
Open this publication in new window or tab >>Gender Identity, Sexuality, and LGBTI Perspectives in Swedish Dementia Care Policies
2025 (English)In: Journal of gerontological social work, ISSN 0163-4372, E-ISSN 1540-4048, Vol. 68, no 7, p. 956-977Article in journal (Refereed) Published
Abstract [en]

This study aims to explore articulations of gender identity, sexuality, and LGBTI perspectives in national as well as local dementia care policies and guidelines in Sweden. The analysis of the documents is influenced by Bacchi's WPR-approach. The analysis illustrates how there is a general silence on gender identity, sexuality, and LGBTI perspectives in policy. LGBTI perspectives tend to be addressed separately from people with dementia and most often present as potential grounds for discrimination. LGBTI people with dementia appear to be non-existent, and gender identity and sexuality irrelevant to dementia care and person-centered approaches, and by extension irrelevant to personhood.

Place, publisher, year, edition, pages
Taylor & Francis, 2025
Keywords
Dementia, Policy, LGBTI, Sexuality, Gender identity, Dementia Care
National Category
Gender Studies
Identifiers
urn:nbn:se:sh:diva-56789 (URN)10.1080/01634372.2025.2472971 (DOI)001437576300001 ()40042171 (PubMedID)2-s2.0-86000486248 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2021-01979
Available from: 2025-03-13 Created: 2025-03-13 Last updated: 2025-11-06Bibliographically approved
Sandberg, L. J. & Siverskog, A. (2025). True inner self or fantasies and fabulation?: Discourses on gender identity, sexuality, and LGBTQ among care workers in Swedish dementia care. Dementia, 24(8), 1537-1557
Open this publication in new window or tab >>True inner self or fantasies and fabulation?: Discourses on gender identity, sexuality, and LGBTQ among care workers in Swedish dementia care
2025 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 24, no 8, p. 1537-1557Article in journal (Refereed) Published
Abstract [en]

Lesbian, gay, bisexual, trans and queer (LGBTQ) people make up a considerable proportion of those in need of formal dementia care. Yet sexuality and gender identity have received little attention in dementia care research. Using a discursive approach, this article explores how dementia care workers discuss and reflect on dementia, gender identity, sexuality and caring for LGBTQ people with dementia. The article is based on a focus group study with dementia care workers in Sweden, primarily nurses and nurse assistants. The findings point to pervasive heteronormativity in everyday care practice; non-normative sexualities and gender nonconformity were primarily deemed invisible but also sometimes questioned as "fabulations" or "fantasies". The invisibility of LGBTQ people was discursively framed as a result of generational belonging: people with dementia belonged to generations who were assumed to be closeted. Gender identity and sexuality were also framed as sensitive issues that were difficult to address with people with cognitive conditions. Dementia was understood as bringing out the true sexual or gendered self, but also as causing confusion and inauthentic expressions of gender and sexuality. In conclusion, existing discursive framings locate problems of heteronormativity outside of care practice and risk leading to inaction; more direct challenges to heteronormativity are needed in dementia care.

Place, publisher, year, edition, pages
Sage Publications, 2025
Keywords
LGBTQ, dementia, sexuality, gender identity, dementia care
National Category
Gender Studies
Identifiers
urn:nbn:se:sh:diva-56503 (URN)10.1177/14713012251319821 (DOI)001419852200001 ()39945289 (PubMedID)2-s2.0-105000011607 (Scopus ID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2021-01979
Available from: 2025-02-24 Created: 2025-02-24 Last updated: 2025-11-06Bibliographically approved
Principal InvestigatorSandberg, Linn
Co-InvestigatorSiverskog, Anna
Coordinating organisation
Södertörn University
Funder
Period
2022-01-01 - 2024-12-31
National Category
Gender Studies
Identifiers
DiVA, id: project:3000Project, id: 2021-01979_Forte

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