ALZHEIMER EUROPE
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.
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 aim of this work was to promote the right The report highlights and explores the differof every person with dementia, irrespective ent experiences, as well as common issues, of their sex, gender identity and sexual orien- that cut across one or more gender or sexual tation, to be treated with respect and to have identities (e.g. male, female, intersex, bi-genaccess to timely diagnosis, treatment and good der, gender fluid, trans, non-binary, straight, quality care and support. This work was part lesbian, bisexual or gay). It also considers how of Alzheimer Europe’s ongoing ethical reflec- other factors, such as ethnicity, disability, levtion on issues which impact on the lives and els of literacy and education, religiosity and wellbeing of people with dementia, in terms spirituality, as well as socio-economic status, of what is ethical (i.e. right or wrong, morally affect the experience of men and women of defensible or not, fair or unfair etc.) and how different gender/sexual identities. we ought to live with and treat one another. It is important to look at structural discrimThe report has three key sections which ination against women throughout their explore the experience of seeking and obtain- life course but also at the specific experiing a diagnosis, people with dementia living ences and challenges encountered by LGBT* out their gender and sexual identities and people with dementia and their carers/supaccessing and using professional services, porters. People with dementia have complex, support and care. intersecting identities and may experience different types and levels of discrimination. Sex, gender and sexuality are closely inter- We emphasise the need to challenge the related and cannot be neatly separated into tendency to attribute blame for failings in distinct categories but the working group dementia care to low-paid, predominantly carefully teases them apart for the pur- female care workers, and to advocate on pose of reflection and to challenge moral behalf of predominantly female, unpaid carjudgements based on ageist or disablist ers regarding issues such as loss of income assumptions (about what is appropriate and pension entitlements, as well as pracfor older people and people with cognitive tical and emotional support. Drawing on 8
Dementia in Europe
Sex, gender and sexuality in the context of dementia: a discussion paper
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).
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. The Ethics Report is available to download at: https://www.alzheimer-europe.org/ reports-publication/sex-gender-and-sexuality-context-dementia-discussion-paper
