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Attitudes to sexual expression in nursing home residents with dementia must change

Older people with dementia who live in nursing and care homes are frequently denied the opportunity to express themselves sexually. This is the finding of new study which is calling for an urgent change in attitude towards older people and their human need for sexual expression. 

The research from Queen Margaret University, Edinburgh reported that, despite their age and health issues, older residents in nursing and care homes who are living with dementia still experience sensual and sexual desires and long for intimate relationships. However, the intimate and sexual needs connections that older people crave are often unnoticed or dismissed by the health professionals involved in their care. The report calls for urgent action to address outdated attitudes towards older people with dementia, and encourages more conversation about how nurses can improve person-centred care and support individuals with dementia to express their sexuality and live full lives. 

It is a fact that the need for intimacy and sexual expression does not diminish as we move into older age, nor may it disappear with loss of capacity. Research shows that sensual-sexual expression provides emotional and physical benefits throughout life, and therefore, room to express one’s sexuality needs to be taken seriously by those working in the care of people with dementia. However, the topics of both sensual and sexual expression are often overlooked in policy and practice relating to the care of older people in care and residential homes. Health professionals tend to shy away from this sensitive and controversial topic, with the result that older people can be denied their basic human needs for comfort, companionship and pleasure. 

The study ‘Sexual Expression in Persons Living with Dementia’ was carried out by Dr Karen Rennie, for her PhD at Queen Margaret University. Dr Rennie, who is now a nursing lecturer at the University, became aware the awkwardness surrounding sexual expression while working as a nurse in nursing homes. 

"Sexual expression is a natural and normal part of human life but it was treated as a taboo subject in the nursing home sector. I felt very uncomfortable about how nursing staff treated older people with dementia when they showed any signs of sexual expression. Displays of sexual expression by residents was viewed as a problem. Expression of sexuality – even in privacy of one’s own bedroom or bathroom - was classified as an ‘issue to report’. There was a lack of training in dealing with sexual expression, and so staff would sweep the topic under the carpet or view any display of sexual expression in a negative way. People’s needs were dismissed and, on some occasions, older residents who expressed themselves in a way which was deemed to be “sexually inappropriate”, were isolated by staff and received poorer care."

Dr Rennie continued: “Ageist myths which promote older adults are asexual have led the general public, healthcare professionals and older adults themselves to believe that sexual expression, let alone sexual activity, is not for the aged. Even though research has highlighted this issue in the past, our society has not moved forward in its thinking or attitude towards older people in residential nursing and care homes, and their need to express themselves as human beings.” 

What makes this study unique from other research in this area, is that it is the first PhD study on this subject to actively involve older people with dementia in care homes as research participants. 

Dr Rennie continued: “Due to the sensitive nature of the study, there were lots of safeguarding elements involved, but in fact, the residents were eager to speak to me about their thoughts and experiences. They were overjoyed to take part and to have their views, feelings and concerns voiced in the research. 

“Interestingly, every resident who took part in the research expressed their upset at having to sleep in a single bed. That issue alone was viewed as a clear indicator that any sexual relations would not be accepted by care givers or management. Even a married couple were initially housed in two separate bedrooms in single beds and were ‘allowed’ some time to spend together by staff. It was so sad. There was a clear lack of understanding and tolerance of any kind of sexual expression or desire toward older people in nursing homes. 

“There was one 94 year old man whose wife had died. He discussed the very loving relationship he had had with his wife and expressed his hopes of having a meaningful sexually active relationship with someone else in the future. So it’s important that we don’t write off people’s desire for sexual relations in the latter stages of their lives, or put obstacles in their way of achieving them.” 

Dr Rennie stated: “There were many ageist assumptions made by staff in nursing homes – One nurse said: “Whatever you do, don’t talk to them about sex!” Nurses form opinions on their own values and beliefs about older people and sexuality. People get used to society’s cultural norms about sexual expression and just accept them blindly. For people living with dementia, to add cognitive decline on top of ageist stereotypes, has given professionals and academics the beliefs that sexual expression is unnatural, strange and challenging.  This has been tolerated for too long and we need to challenge this mind set. However, by creating the space for nurses to talk about sensual and sexual expression, they started to challenge their own assumptions and critically think about sexual expression in older adults living with dementia. 

“We need a fresh perspective for older people with dementia and we can only do that by including them in the conversation. It’s important for nurses and management to ask themselves how each and every one would like to be treated as individuals in their older age.” 

Dr Rennie confirmed: “The research also showed that there was a lack of education about sexual expression when dealing with older people who live with dementia – that’s within undergraduate degree level nurse education and for established nurses already working in the nursing and care home sector. At Queen Margaret University, we will be addressing this by including this important topic within our Pre-registration Master of Nursing programme.” 

Dr Erna Haraldsdottir, Director of the Centre for Person-centred Practice Research at Queen Margaret University, said: “We are really proud that Dr Rennie is breaking new ground in this important area of dementia care. One of the pivotal areas of this research has been about listening to the thoughts and experiences of those living with dementia. Worryingly, the report confirms that expressions of sexuality are regarded by many nurses as inappropriate at best. At worst, they are regarded as ‘abnormal’, ‘challenging’ and abusive behaviours to be managed with a view if possible, to stopping them or if not a least minimising them. To improve the well-being of people with dementia, person-centred interventions need to be established to respond to, rather than manage, a wide range of sexual expressions. Significantly, this research introduces the idea of sensuousness and this can offer a way to start those essential conversations so badly needed. The only way to get a real insight into the lives of people with dementia is to give them a ‘voice’: enabling them to speak of their individual needs.” 

The research results have allowed Dr Rennie to create ‘The Sensuous-Sexual Expression Framework’ which views sexual expression as a meaningful part of being a human being rather than the biomedical behaviour model of dementia which views sexual expression as a symptom of the dementia diagnosis. 

Dr Rennie said: “Moving forward, we all need to be mindful to relate to, and work with older people as individuals – as whole human beings with a wide range of physical and emotional needs, and not just focus on the aging body as something that needs to be cleaned and checked for various problems.” 

Dr Rennie concluded: “Nursing care has come so far in the last few years but we still have more work to do to improve person-centred care. We need a holistic approach to living well in older age and people with dementia need to be heard. Sensuous-sexual expression must be an important part of dementia care and care of older people in nursing homes. I hope this research helps to open up the conversation.”