LGBTQ and dementia in policy and practice in Swedish dementia care

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.