Sex, gender and sexuality in the context of dementia

Sex, gender and sexuality in the context of dementia: new report by Alzheimer Europe’s ethics working group

Alzheimer Europe has published a new report on sex, gender, and sexuality, exploring these issues in the context of dementia and how these may impact on the lives of people with dementia.

In 2021, Alzheimer Europe’s ethics working group explored the topic of sex, gender and sexuality in the context of dementia. The group was composed of experts in the fields of dementia, gender studies, ageing, ethics, psychology, service provision and the training of healthcare professionals. There were members of the group with and without dementia, and with different gender identities and sexual orientations.

The aim of this work was to promote the right of every person with dementia, irrespective of their sex, gender identity and sexual orientation, to be treated with respect and to have access to timely diagnosis, treatment and good quality care and support. This work was part of Alzheimer Europe’s ongoing ethical reflection on issues which impact on the lives and wellbeing of people with dementia, in terms of what is ethical (i.e. right or wrong, morally defensible or not, fair or unfair etc.) and how we ought to live with and treat one another.

The report has three key sections which explore the experience of seeking and obtaining a diagnosis, people with dementia living out their gender and sexual identities and accessing and using professional services, support and care.

Sex, gender and sexuality are closely interrelated and cannot be neatly separated into distinct categories but the working group carefully teases them apart for the purpose of reflection and to challenge moral judgements based on ageist or disablist assumptions (about what is appropriate for older people and people with cognitive difficulties). The report highlights how heteronormative assumptions negatively impact on the lives and wellbeing of so-many people with dementia. These are taken-for-granted assumptions about heterosexuality, which rest on biased, narrow-minded and discriminatory beliefs and attitudes towards LGBT* people and on the belief that heterosexuality is the default, preferred or normal mode of sexual orientation.

The report highlights and explores the different experiences, as well as common issues, that cut across one or more gender or sexual identities (e.g. male, female, intersex, bi-gender, gender fluid, trans, non-binary, straight, lesbian, bisexual or gay). It also considers how other factors, such as ethnicity, disability, levels of literacy and education, religiosity and spirituality, as well as socio-economic status, affect the experience of men and women of different gender/sexual identities.

It is important to look at structural discrimination against women throughout their life course but also at the specific experiences and challenges encountered by LGBT* people with dementia and their carers/supporters. People with dementia have complex, intersecting identities and may experience different types and levels of discrimination. We emphasise the need to challenge the tendency to attribute blame for failings in dementia care to low-paid, predominantly female care workers, and to advocate on behalf of predominantly female, unpaid carers regarding issues such as loss of income and pension entitlements, as well as practical and emotional support. Drawing on the concept of microaggression, we demonstrate how subtle discriminatory treatment and hostile attitudes and behaviour towards certain groups in society, based on their sex, gender or sexual orientation, as well as violence per se, unfortunately persist and need to be challenged.

We hope that the report and recommendations will raise awareness about some of the invisible, marginalised and ignored groups of people who have dementia and their carers or supporters. We also hope that this report will contribute towards giving them a voice and that unequal and discriminatory power structures and societal inequalities will be taken on board by policy makers, researchers, current and future health and social care professionals and members of the public.

Members of the expert working group

Dianne Gove, Chair, Aileen Beatty, Andrea Capstick, Patrick Ettenes, Jean Georges, Fabrice Gzil, Phil Harper, Helga Rohra, Linn Sandberg, Anthony Scerri, Charles Scerri, Annemarie Schumacher Dimech and Karin Westerlund.

Download the report

https://www.alzheimer-europe.org/ reports-publication/sex-gender-and-sexuality-context-dementia-discussion-paper

Acknowledgement

The report entitled “Sex, gender and sexuality in the context of dementia: a discussion paper” received funding under an operating grant from the European Union’s Health Programme (2014–2020).