Sex, Gender and Sexuality in the Context of Dementia

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 far too often invisible.

We therefore hope 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. We also hope to challenge assumptions and inequalities and help ensure that everyone is free from violence, discrimination and harassment. Our goal is to ensure good dementia care and support for everyone, irrespective of their sex, gender identity and sexual orientation.

The 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. It 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.

The guide is based on the ethics report Sex, gender and sexuality in the context of dementia: a discussion paper, published by Alzheimer Europe in December 2021. This report was produced by a working group of experts in the fields of dementia, gender studies, ethics, ageing, service provision, training of healthcare professionals, nursing and psychology. The group was made up of men and women with and without dementia, and with different gender identities and sexual orientations.

We realise that some  readers are familiar with the concepts of sex, gender and sexuality and others less so, but terminology is constantly evolving. Some terms have become obsolete or offensive and others have gone a complete circle from being considered offensive to becoming a preferred term. Some require a bit of explanation as they are not used in everyday conversations but they are closely linked to assumptions, practices and prejudice which affect the wellbeing of and respect for many people with dementia. We have therefore included a footnote when they are used for the first time and at the end of the report you will find a more detailed explanation of some of these terms and a concise glossary.