A quiet heartbreak is unfolding behind the closed doors of dementia care, one that few carers dare to speak about openly: the ebb of physical intimacy.
It is a distressing issue for the hundreds of people who weigh in. In emotional comments, both men and women describe their experiences, challenges and concerns, such as these below:
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“For the past two years, we’ve slept in separate bedrooms. I just can’t go there: there is nothing sexy about a man who never showers or shaves and does nothing all day but sleep.”
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“I have so many beautiful memories, but today is a very different reality, and I can’t ‘fake’ it. I tell him my hormones don’t work any more and I can’t do it – I tell him it is all my problem – a medical one. I hug him and tell him I am sorry. So far it has worked – but it breaks my heart.”
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“My wife and I once enjoyed a very active sex life before she presented with [dementia] symptoms. The last time we had sex was a few years ago; she actually initiated it, but during the act, something shifted, her body stiffened visibly, and her expression changed. That was that. For me, consent in my mind was withdrawn and that was the very last time.”
Some respondents speak to struggling with partners who exhibit sexual desire that they cannot reciprocate because they feel more like parents than partners: “I feel like he’s my child now.” Some describe a partner’s anger when they do not respond in kind. Some explain that a period of uninhibited sexual interest is a phase of the illness and will wane or can be managed with medication.