Understanding the changes in intimacy that accompany dementia

My name is Dr. Jane Youell, I am a social psychologist, a researcher, a practitioner and a carer.  I’ve been invited to write a short blog about my doctoral work which asked the research question ‘how do people living with dementia and their carers experience and understand the changes in intimacy that accompany living with dementia’.

It was a primary aim of this doctoral work to include people with dementia, at the time that I started looking at this area some 5 years ago this was a pretty radical idea.  Up to then, people with the diagnosis were not featured largely in qualitative research it was mostly clinical trials.  But it seemed fundamentally wrong to me that what I was interested in, essentially, was the marital relationship so how could I ignore one half of that relationship?  I managed to recruit 10 couples, one of whom had a diagnosis and a further 11 carers who cared for someone with a diagnosis.   There were 31 interviews in total. Interviews lasted approximately one hour if not more – some participants had a LOT to say and the result was a huge but wonderfully rich data set.

As a social psychologist, I am really interested in assumptions and what they do in the world.  One of the most common assumptions I hear is this – old people don’t have sex, if you talk to my children, old people are anyone over 25 so there’s not much hope for any of us really, the second assumption I hear is that people who are ill don’t have sex.  So when we think about older people with dementia they DEFINITELY don’t have sex.

But they do.  Not as much as when they were in their twenties perhaps, but sexual expression and intimacy are still very important factors even in old age.  My doctoral work followed on from an earlier project I conducted.  This early project interviewed carers who lived with a person who had dementia and one of the strongest themes to emerge was I don’t know if you wanted to know this but…..  Whereupon carers would tell me about the messy, complex and sometimes difficult situations they encountered in their intimate lives.  Now these assumptions are deeply embedded in our culture, even in health.

The themes which emerged from my doctoral research study spoke of how pleasurable sex is, sex is enjoyable, sex is part of a full, shared life.  This isn’t something we need to whisper about.  Sex is great!  But that for older people, talking about sex is often difficult.  My participants were able to talk to me quite openly and candidly because I let them.  I created a social space where it is ok to talk about sex, I’ve made it clear that I don’t buy into that assumption that it is no longer important in old age.  I think it is really important that we provide spaces to talk about the things we want to talk about but cannot.

What also came through was that we tend to normalize our sex lives through the language we use, but across the participant group there was real diversity in experiences.  These experiences affected the care decisions which were subsequently made.  I am thinking of one participant in particular whose husband liked to cross dress.  She was most anxious about how this would be understood in a residential setting and so she put off making the decision, coping to the point of exhaustion at home until the last few weeks of his life.

I also heard accounts of the challenges of continuing an intimate relationship after a dementia diagnosis, of the loss of intimacy for the carer at a time when you just needed a cuddle and a bit of reassurance.  Some carers talked of the complexity of capacity and consent in sexual relationships.  Most, but not all, recognized when it was appropriate to stop when situations no longer felt consensual.  All were grateful for the opportunity to just talk about it.

I am now moving this work on and developing a toolbox of strategies for carers, people with dementia and their support workers to open up conversations about intimacy and unpack some of the complexities found in these relationships.  Underpinning my work is still the desire to encompass the views and experiences of those living in relationships affected by dementia.  As such I would very much like to hear from people who would like to share their stories with me and help me to develop a better understanding of how we, the professionals, can support relationships affected by dementia.  My email address is jane.youell@northampton.ac.uk I look forward to hearing from you.

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