Learning how to deal with love and relationships is no easy matter when one or both of those involved has dementia – finds the last in our series of reports on love and sex when we’re over 60.
“If you were to go into a bedroom and a man had an erection, what would be the good practice response to that?”
This is a question posed to a room full of care home staff at a training session in London.
Sex and dementia is almost never spoken about. But as more of us live with the condition, it’s an issue care homes are increasingly having to learn to deal with.
David Sheard is the founder of dementia consultancy, Dementia Care Matters which trains care staff to better deal with intimacy and relationships. He believes that many care homes have until now seen “sexual behaviour as a problem to be suppressed”.
Yet physical closeness is often the very thing those with dementia seek because when you can no longer rely on facts or memory, as David Sheard explains: “if you rely more on feelings, and are more sensitive to feelings, then of course you are also going to be seeking more closeness.”
In Bristol, Maureen and Terry were both living with dementia in the same care home when they started a relationship and became physically involved. The initial reaction of the staff was to close the relationship down, and they moved the couple to opposite sides of the building.
But it soon became apparent this wasn’t the best thing to do.
Jess Hammett was one of their care workers: “When they were separated it caused a lot of distress for Maureen who would go round looking for Terry, she would physically go in to other people’s rooms. She would blame staff for hiding him”.
So the home called in a dementia consultant who believed the couple were capable of deciding to be together. Now Maureen and Terry have been reunited and given a room where they can be intimate if they wish. Jess added, “if Maureen and Terry were out in the community this would be normal, who are we to say this isn’t normal”.
The outcome for Maureen and Terry was good. But this isn’t always the case. As it’s not just care home staff who can stand in the way of a blossoming relationship, but relatives too.
At a care home in Cambridge, Stan and Bridget sit holding hands as they do every day. They became close just days after Stan’s wife died after 70 years of marriage. She too had been a resident and so both staff and family were shocked and upset by Stan appearing to move on so soon. But Stan has dementia and Bridget’s company was very comforting to him.
Stan’s daughter Gill explained how hard it was to accept the new situation when they were still grieving. “Life picked up for him, she helped him a lot… Everything had moved on. Sadly we couldn’t”
Emotions never die, it doesn’t matter if you have a cognitive impairment. You still have feelings Care home manager
Bridget’s daughter too finds the situation hard to accept. She sits down next to her mum, who also has dementia, and asks if she knows the name of the man she is holding hands with. Bridget sounds confused but eventually says it’s Stan.
“Holding hands, doing the crossword together, chatting, lovely and that makes mum happy and there’s nothing wrong with that. But I just don’t want them to go any further,” Gill said.
But Stan and Bridget’s care home manager is resolute in believing it is up to her residents to decide what they want from their lives: “We are not going to wrap them up in cotton wool. We are going to let them live, we are going to let them be human beings. Because emotions never die, it doesn’t matter if you have a cognitive impairment. You still have feelings.”
David Sheard echoes this sentiment, acknowledging how difficult it is for relatives. “It’s absolutely massive to ask a husband, a partner, a daughter to understand the person with dementia is living in their moment, in their reality, which can’t be fixed. They can’t be dragged back.”
If you’ve been married for many years, it can be especially difficult to accept the changes dementia brings to your relationship.
Ernie has been married to Barbara for over sixty years, and visits her every morning at her care home. He told us, “It’s just a matter of watching them pass away slowly, that’s the hardest part. Because you can’t do anything”.