Alzheimer Europe launches new guide to help raise awareness of issues around sex, gender and sexuality in dementia

30/01/2023

Luxembourg, 30 January 2023 – Alzheimer Europe has today launched a new guide called “Sex, Gender and Sexuality in the Context of Dementia: A guide to raise awareness amongst health and social care workers”.

Sex, gender and sexuality are fundamental aspects of our lives, which influence how we see ourselves, how others see us and our position in society. In recent years, there has been increasing awareness about sex, gender and sexuality and the many different gender identities and sexual orientations that people have. Unfortunately, there is still a lack of information on this topic in dementia care where this central part of our identity is all too often invisible. Europe is still highly influenced by heteronormative assumptions (i.e. that everyone is heterosexual, identifies with the sex attributed to them at birth and lives in a close-knit biological family) and this is also the case in dementia care and support. The societies we live in have developed structures of care and support around these assumptions, which, unfortunately, also often reflect homophobia, transphobia, ageism and ableism. This is reflected in negative stereotypes about the sexuality of older people and people with dementia, and broad generalisations about what men and women with dementia want or need in life, and what is considered “normal” or acceptable behaviour.

In 2021, Alzheimer Europe set up a working group with expertise in this area to look closely at these issues. The working group included men and women with and without dementia, and with different gender identities and sexual orientations, from the fields of dementia, gender studies, ethics, ageing, service provision, training of healthcare professionals, nursing and psychology. The group produced a comprehensive report on the topic, which can be obtained at:

https://www.alzheimer-europe.org/resources/publications/2021-alzheimer-europe-report-sex-gender-and-sexuality-context-dementia

Following on from this work, a short guide was developed in 2022 to raise awareness and provide health and social care workers with recommendations on how to provide sensitive, appropriate and good quality care and support to people with dementia and their carers or supporters of different sexes, gender identities and sexual orientations.

The new guide is about the experience and wellbeing of men, women and non-binary people with dementia who are living alone or with a partner and who may or may not be sexually active. We draw attention to inequality, discrimination and lack of sensitivity towards their needs and wishes, both from other people and through structures and procedures within society, also towards their families, carers and in some cases health and social care workers. The guide is not limited to the experience of LGBTQ+ people but their experience is often qualitatively different to that of non-LGBTQ+ people and they encounter several issues that others do not, hence the frequent reference to this group in the guide.

Dianne Gove, Director for Projects at Alzheimer Europe commented: “We need to ensure that everyone with dementia feels accepted and valued for who and what they are, that they feel safe to be open about their gender identities and sexual orientations, and that they can all enjoy the same rights, respect and opportunities as other members of society.” We hope that this guide will provoke reflection, contribute towards challenging assumptions and inequalities and help ensure that everyone is free from violence, discrimination and harassment irrespective of their sex, gender identity or sexual orientation. The new guide can be downloaded from the Alzheimer Europe website, at:

https://www.alzheimer-europe.org/sites/default/files/2023-01/sex_gender_and_sexuality_in_the_context_of_dementia_a_guide_to_raise_awareness_amongst_health_and_social_care_workers.pdf