News Opinion

Sexuality … is not an optional extra for dementia care.

Dr Donald Macaskill, CEO, Scottish Care

In my work I often highlight the importance of human rights and their role at the heart of all care and support.

For me human rights and the ability of an individual to have choice and control, should be at the centre of all that care providers seek to do. They are in essence about ensuring that care and support is built around the unique character and needs of an individual rather than expecting that individual to change to fit in with our organisation, our requirements and our demands.

There is a lot of talk about human rights but when you start to think of what this means in practice it is then that we get into challenging territory. No more so than when we begin to reflect on the role of choice, control and rights in relation to sexuality, sexual expression and sexual identity. There are some very unhelpful and negative societal attitudes which exist around older people, dementia and sexuality. People either ignore the issue, treat it as some sort of taboo, or turn sexuality and the desire to be sexual with dementia into some sort of clinical concern.

When an individual is diagnosed with dementia, at whatever age, then they are faced with many challenges. Amongst these are the changes which occur in their own self-identity and how they are considered by others. This is especially an issue if the individual has had a long-term relationship or partner. That relationship and partnership, including the sexual dimension, continues to be important after diagnosis and it deserves to be validated and valued by those who care.

Sexuality is an intrinsic part of what it means to be a person. After diagnosis there is a potential that there might be a change in how someone considers themselves as a sexual being. Intimate relationships may be affected and often memory changes impact on sexual expression. But all too often the discussions on sexuality and dementia focus on the need to manage behaviour, they stress issues of risk, there are debates around intellectual capacity and consent. In many instances no-one talks about sexuality and sexual health. It is almost as if a core part of who we are as a person one day disappears as soon as we have dementia.

Scottish Care has been seeking to increase the dialogue and debate around sexuality and dementia because fundamentally sexuality is a core part of what it means to be human. We are calling upon organisations to think about how they support individuals and their families when dementia changes that individual and their relationships.  We are suggesting the need to develop clear policies and practices around sexual expression. We hope the workforce will access learning and development opportunities to address what are often sensitive issues. We are highlighting the need for particular focus to be given to ensure that individuals who are LGBTI do not experience marginalisation or discrimination as their dementia changes or if they have to access residential or nursing care. We know we are not as good as we can be about celebrating the contribution of sexuality and around enabling sexual expression and identity.

Sexuality is the essence of relationship, of intimacy and physicality and all too often it is marginalised or ignored in our care and support systems. Just like good care sexuality is all about human touch, sensuousness, physicality and memory. It is simply about the rights and dignity of an individual.  Nothing more but equally nothing less.

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