Dementia and sexuality, the Alzheimer Europe guide

Dementia and sexuality, the Alzheimer Europe guide

When we think about the life of a person with dementia, whether it's Alzheimer's or other neurodegenerative diseases, we rarely stop to reflect on the aspect of sexuality. And even if we do, we tend to assume things that aren't, like heterosexuality. Alzheimer Europe, an organization comprising 41 national Alzheimer's associations from 37 European countries, put together a group of experts in 2021 to look into these aspects.

The result of the work has resulted in the publication of a report of over 60 pages and a shorter guide, aimed above all at professionals working in the dementia sector, but also at all citizens. The guidance within it is intended to raise awareness of these issues and to provide practical guidance to be able to support patients in a way that is sensitive, appropriate and respectful.

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heteronormative assumptions

Experts call the assumption that everyone is heterosexual, that everyone identifies with their biological sex, and that everyone lives or has lived in a family consisting of a mother, father, grandparents, and so on, a heteronormative assumption. It is a form of projection that the heterosexual part of our society applies to the rest of the population and that does not only concern people with dementia.

However, precisely because there is a tendency to reflect less on their affective and sexual component, it is easy for these people to be victims of a stereotyped vision even more often. Let's see what Alzheimer Europe's recommendations are to prevent this from happening.

One: the impact of stereotypes on early diagnosis

First of all, the authors stress the importance of a person with dementia receiving an appropriate diagnosis quickly. There are many diseases that cause dementia and recognizing them also means ensuring the most appropriate therapy. On this aspect, they explain, LGBTQ+ people can be disadvantaged by the fact that more often than others they live alone: ​​living together with family members, partners or children in fact increases the probability that the disease will be recognized from the first symptoms. It is therefore important to reflect on these differences, also and especially for those who work in facilities for the elderly, where, the authors write, there is a general "downward trend" as regards the diagnosis of dementia. Instead, it is essential to actively support people who we suspect may be affected by the disease and who may have difficulty accessing the diagnosis without outside help.

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Two: respect the identity of the person with dementia

People with dementia often depend on the support and help of loved ones or healthcare professionals. What if this support ceases, more or less consciously, once the person's sexual identity is known? Our cultural biases and stereotypes can limit us more than we think in our ability to empathize with each other. Respecting the identity of a person with dementia can therefore also mean not forcing them to share personal details that, in self-defence, fear or for other reasons, they have decided not to share.

At the same time, it is necessary to support those suffering from dementia to remain faithful to their identity, sexual (if declared) but not only: among other things, the authors underlining the importance of freedom in choosing clothes, but also in using of the personal pronoun (he/she) in which each of them is more reflected. They seem like details, but they can make a difference in everyday life and also in the long term. Furthermore, it is good to remember that a person is more than her gender identity: respecting her and deeply understanding her needs, interests and preferences is fundamental. For example, it is limiting to exclude people from certain common activities only on the basis of their biological sex: whoever tells us, for example, that a man (young, old, with dementia or not, straight or not) cannot be interested in sewing or floral decorations ?

Three: nothing is taken for granted

Fundamental, continues the guide, is to question any kind of assumption regarding the sexual and relational life of people with dementia and rather ask yourself what is your level of understanding and what are your prejudices in this regard: recognize the right to privacy and guaranteeing these people access to spaces in which privacy is essential. In fact, it is wrong to assume that people with dementia are not capable of establishing relationships, and as regards the sexual sphere in particular, it is important to ask whether or not the person is able to express their consent. Therefore, pay attention to the language and the way humor is used, because discrimination and violence are often acted out with "only" words. Finally, it is essential to avoid assuming that everyone is linked to one's biological family and instead also allow partners and people with whom patients have an emotional bond, even if not legally recognized, to stay close to them.

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Four: promote diversity and inclusion among professionals in the sector

Certainly the best way to create an inclusive and (ideally) non-discriminatory environment is to promote diversity and inclusion even among the professionals who care for people with dementia. Different stories, experiences and points of view always help to review one's ideas and to realize one's prejudices. "We must ensure that all people with dementia feel accepted and valued for who they are, that they feel confident they can speak openly about their gender identity," concludes Dianne Gove, director of Alzheimer Europe projects. and their sexual orientation and that they can enjoy the same rights, respect and opportunities as other members of society".

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