Dementia patients inner desires should be catered for

“He was viewed as a horrible, dirty old man and told to leave the student nurse alone. I felt awful, he might have been confused, he might have thought he had woken up next to his partner.

“But it was assumed that he was a bit of a predator and didn’t deserve to get care that was at as high a standard as others.”

Later when she sought guidance for nurses on how to help dementia patients who display sexual behaviour, she was taken aback to find there was none.

While the care home staff she spoke to, she recalls, often felt uncomfortable at the thought of older residents being interested in sex.

And instead of receiving support, she realised dementia patients who strayed into using sexual language or behaviour, tended to face different treatment to those who didn’t.

“People didn’t know how to deal with that situation,” she adds. “It was usually deemed to be a problem and a symptom of dementia rather than being seen as a part of who that person is.”

She went on to study the issue for her PhD at Queen Margaret University, speaking to residents at a care home in Renfrewshire - the first research of its kind on the topic to actively involve older people with dementia in care homes as research participants.

Now Dr Rennie, and a nursing lecturer at Queen Margaret University in Edinburgh, her report findings have just been released - and reveal how outdated attitudes are leaving often confused dementia patients deprived of intimate interaction, scolded for using ‘inappropriate’ language or displaying sexual behaviour, and branded as a risk.

In some cases, residents struggling after being separated from life-long partners faced being denied basic human needs for comfort, companionship and pleasure.

One of them, a 94-year-old widower told of yearning to forge a new relationship against a care home background where sexual expression was often treated as a problem and taboo subject by staff.

Her study concludes with a call for urgent changes in attitudes towards older people and their sexual needs, with improved education for nurses and carers to help people with dementia express their sexuality and live fuller lives.

“Sexual expression is a natural and normal part of human life but it was treated as a taboo subject in the nursing home sector,” she says. “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.

“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.”

She says a recurring issue surrounds sleeping arrangements in care homes.

“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 were many ageist assumptions made by staff in nursing homes. One nurse said ‘Whatever you do, don’t talk to them about sex!’.”

Her discussions with nursing home residents also revealed some wrestling with deep needs for companionship and intimate relationships.

“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."

Care homes were often risk averse and fearful of the repercussions from visitors, families and others if they 'allowed' relationships to develop, she adds.

Of particular concern is when a dementia patient - who may have no recollection of a spouse or partner at home - forges a new connection with another resident, raising a range of ethical questions for staff and difficulties for families.

However, according to Dr Rennie, often residents are simply seeking the kind of companionship they have experienced throughout their adult lives.

“Some residents I spoke to just wanted a partner to lie in bed with and cuddle. They spoke about missing intercourse and everything in between.

“Some missed just talking about sex and relationships. One gentleman said he knew he was probably not going to have sex again, he didn’t need or want it, but missed talking about that part of his life.

“One woman said what would help her connect with her sexuality was to just sleep naked in bed, but she felt obliged to wear these nightdresses from M&S that her mother would wear.”

A common scenario, she added, is when a married resident forges a relationship with another resident, raising a series of complicated issues for staff and families.

“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.”

Once nursing staff were given the chance to talk about older people's sensual and sexual expression, they often challenged their own assumptions.

“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," she adds.

The research has led to the topic becoming embedded in Queen Margaret University’s Pre-registration Master of Nursing programme.

 Dr Erna Haraldsdottir, Director of the Centre for Person-centred Practice Research at Queen Margaret University, said: 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.”