Sexuality and dementia can be a taboo topic.
I was reading up on the research around sexuality and dementia for a course we are launching this year and I came across a news article from the New York Times about a court case in which an elderly gentleman was charged with third degree felony sexual abuse for having a sexual encounter with his wife, who had a diagnosis of Alzheimer’s Disease and was living in a care home. There are many heart-breaking elements to this story, and whether the husband did or did not do something wrong was only one of the larger issues that was highlighted. The court case brought into focus the difficulties around issues of capacity and consent, family involvement and rights, as well as the challenges faced by care providers to provide truly person centred care that recognises and supports people’s needs for intimacy in a communal living environment. Interestingly the Times received so many comments on the article (nearly 1200) they published a follow up article which highlighted the responses of readers, some as you might expect, expressed deep concern over capacity, while others took a much more introspective approach to the story, questioning whether there would be a need to specify in their own Living Will whether they could maintain a sexual relationship with their partner even after they were deemed to lack capacity.
One particularly interesting point that the article raised for me was the way in which capacity and consent were being (or not being) assessed. Best practice in capacity assessment recognises that capacity is situationally specific, meaning that a person may not have capacity to take certain actions, but still have capacity to take other actions. The nature of sexuality is that it transcends verbal ability, and sometimes part of the appeal of sexual activity is that it can carry with it an element of risk. Is it an activity best assessed for appropriateness using our rather medicalised approach to capacity assessment? And what of consent? As one reader pointed out, having been in a 30 year relationship with her partner, verbal consent to sexual activity was rarely needed as they indicated through their actions and responses to each other that they were consenting.
Regardless of the outcome of the case, this story supports the importance of organisations having a written policy about supporting sexual needs among cognitively impaired service users, so that the rights of the individual with dementia to maintain their intimate relationships are protected, but they will also be safe guarded in situations where they may be at risk of harm. Having worked across residential and care services I know that this is an issue that is largely ignored until there is a crisis or a perceived crisis, and when that happens care professionals may find it difficult to feel confident about what role they as a service provider should play. But we need to have these conversations, we need to talk to staff about their concerns, and we need to get better at looking at this from a human rights approach, because to the end of our lives we remain individuals with sexual needs.
Sexuality and dementia can be a taboo topic, yet behaviour that seems inappropriate may be a person's attempt to express basic social and emotional needs. How do we wade through our own ideas of sexuality and ageing to see sexual behaviour for what it is? Join us on March 2, 2017.
DSDC has developed the Best Practice in Dementia Care programme with a focus on person centred care the program can help you achieve national and regional care standards. The programme is accredited by the Royal College of Nursing and City & Guilds