Sex and sexuality are a “basic human right”, and residential care homes should support people to express this if they want to – even if they have dementia, experts will argue today.
The report says “evidence from care home research shows sexuality in its widest form remains an important part of life for older residents”. However it is an area which often causes concerns for relatives and staff.
Meanwhile a lack of understanding and assumptions about people’s sexuality mean gay people can be forced “back into the closet” when they enter residential care, according to Scottish Care, the umbrella body for independent social care providers.
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The organisation is publishing a report today, in partnership with Alzheimer Scotland and the Terence Higgins Trust, which challenges taboos around issues of sexuality, sexual identity and sexual health for older people in Scotland.
Dr Donald Macaskill, CEO of Scottish Care said: “All too often the discussions on sexuality and dementia focus on the need to manage behaviour, issues of risk, capacity and consent. As a society we need to get much better at supporting people who live with dementia, at whatever age, to be able to be full human beings – that crucially includes their ability to be sexual beings.
“We have to get off our prurient moral high horses and let people be fully who they are. Sexuality and sexual expression is profoundly a human rights issue,” he said.
In the publication, Dr Macaskill recounts an occasion in a hospice, where a woman with dementia wanted to spend the last few hours with her life-long lover. “That simple act was not just about dying well, but living and loving to the very end. It was about touch, sensuousness physicality and memory,” he said.
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But another contributor said they found their identity was stripped away when their partner was diagnosed. “My identity as their partner is now seen as ‘main carer’... It devalues our love,” he said.
Meanwhile another said they had been unable to talk about the fact that they were not heterosexual, when dementia was diagnosed. “I felt silenced and worried about when the right time to tell people involved in my care about my sexual orientation would crop up.”
A BBC investigation in 2013 found that elderly gay residents in care homes were often victims of homophobic actions by staff, with a worker refusing to care for one lesbian woman and another whose care worker prayed over her.
Jennifer Hall, of Alzheimer’s Scotland said it was often assumed service users were heterosexual. “The LGBT community is often described as ‘the invisible population’ when it comes to dementia care”, she said.
The report calls for more training in different sexualities for care home staff. It also warns staff are often anxious about dealing with issues of sexual behaviour.
Workers report a lack of confidence in having conversations about older residents’ need to express themselves sexually, and a lack of training in dealing with some of the tensions involved.
Now Alzheimer Scotland and the Three Sisters Consultancy are working to design a bespoke training programme for care workers in Scotland, covering issues such as supporting people with dementia to express their sexuality, balancing individual rights and navigating consent.
Today’s report also calls for healthcare professionals to be encouraged to raise issues of sexuality and sexual needs with older adults. “Assumptions that sexual problems are a normal feature of ageing and embarrassment” stop people from seeking help, it says. Health care professionals are happy to respond, it says, “however neither are comfortable in raising the topic.”
Professor June Andrews, an independent dementia consultant, said the publication was welcome and important. However she said it was a lot to ask staff who are often paid only the living wage to grapple with some of the complex issues involved.
She said it would be better to offer timely training when issues do arise. “In an ideal world all staff would absolutely get training and education to deal with this. In reality some care homes are struggling to do the basic training,” she said.
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