Dementia and sex: the last taboo

How should care home staff deal with intimate relationships, which may flourish despite the disapproval of some staff and relatives? Sally-Marie Bamford, who has recently completed research on this issue, reports

How would you feel if your widowed mother started a new sexual relationship? Your reaction may combine concern and worry with relief. But what if your mother had Alzheimer’s disease and was living in a care home?

Dementia and sexual behaviour remains one of the last taboos of long-term care and has often been ignored and sidelined in policy and practice. This has left care home managers, workers and families wondering how to respond to one of the most personal areas of care.

However, with the predicted increase in the number of people with dementia, and with two-thirds of care home residents having a form of dementia, we can no longer ignore this issue. To address this, the International Longevity Centre has produced a guide to the topic for care home staff, sponsored by the Department of Health and based on existing evidence, best practice and interviews with stakeholders.

Regardless of age, individuals require companionship, intimacy and love, and yet for older people this intrinsic right is often denied, ignored or stigmatised. The evidence suggests that light forms of expression such as holding hands, stroking, or kissing by people with dementia is widely considered acceptable in care homes. However, any further form of sexual expression is met with concern at best, and outrage and shock at worst.

It is not uncommon to hear comments such as: “I just want to protect the residents and look after them. They are defenceless. How can they be expected to fend off the advances of some of the other residents?”

We also know older men are often judged by some care staff to be predatory if they approach older women, whereas similar behaviour from women is either overlooked or draws a more protective response.

One of the challenges that can cause most concern for care staff, families and friends is when a new relationship begins in a care home. This may involve one resident with dementia and one without, or two residents with differing degrees of dementia. Added to this complexity, the resident with dementia may already have a partner who does not live in the care home.

It is perhaps all too easy to assume people with dementia are not capable of forming new intimate relationships; however, as long as the person with dementia is able to make decisions about their life, then their decisions should be respected.

Matters become more complicated, however, when one or both of the residents with dementia may not have the mental capacity to consent to sexual relations.

As residents with dementia are open to abuse, it is essential to carry out a capacity assessment, in accordance with the Mental Capacity Act 2005. This will need to consider issues such as whether the resident with dementia recognises the person they are having the relationship with; whether they can express their views and wishes within the relationship, or how they will be affected by rejection.

Case conferences

A case conference may be called with relevant care workers, other professionals such as social workers, and the family, to discuss how to proceed. The act does not spell out who should take particular decisions, thereby opening up another avenue for disagreement among key actors.

Many care workers and managers believe there cannot be an all or nothing approach to the resident’s capacity to participate in intimate relationships. Each situation must be considered on a case-by-case basis and should be monitored over time, given the progressive nature of dementia.

However if the resident is deemed not to have the capacity to consent to the sexual activity, the Mental Capacity Act does not provide any mechanism to allow people to make advance decisions or have decisions made on their behalf about sexual matters.

Depending on the circumstances, therefore, the relationship and individual involved, could be in breach of the Sexual Offences Act 2003, which prohibits sexual activity with someone with a mental disorder if they are unable to refuse or communicate their refusal.

The very nature of relationships forming in care homes raises some complicated ethical and legal issues for care professionals, and arguably challenges our own beliefs and values regarding older people, older people with dementia, and sexual relations more widely.

If we are to embrace person-centred care genuinely for people with dementia in all care homes, then the expression of sexuality and intimacy, which is emblematic of the right to choice, dignity, expression and individuality, needs to be further enshrined in our practice and policy.

Sally-Marie Bamford is a senior researcher at the International Longevity Centre. This article is based on a forthcoming guide, The Last Taboo, A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes which will be available from the end of May 2011, from www.ilcuk.org.uk

Case study: A relationship against the odds

Frank had a diagnosis of vascular dementia and had been living in the care home for two years when Maggie arrived. Maggie had been diagnosed with Alzheimer’s disease several years previously. Frank and Maggie started spending increasing amounts of time together at the home and it soon became clear to the staff and their families that they had a formed a relationship of a sexual nature.

Both Frank’s and Maggie’s family objected to this relationship. Both were widowed and it was felt by family members that the relationship was inappropriate. As a result, it was decided to assess Frank and Maggie according to the Mental Capacity Act 2005.

It was agreed that they both had the capacity to make this decision for themselves and the relationship was a positive one. While both families were still unsure about it, they did accept Frank and Maggie’s close relationship.

However, over the next year, Maggie’s health declined. She had a serious fall and numerous other health problems. Frank’s dementia had also become more severe and he lacked the capacity to understand just how ill Maggie was and wanted to continue the relationship as before.

Maggie could not continue the relationship and was spending a lot of time in bed in her room, which unfortunately confused Frank further, as he kept trying to get into bed with her.

As both Maggie’s and Frank’s mental capacity was being closely monitored, it was decided that, according to the Mental Capacity Act, the sexual relationship should end. It was not in the best interests of Maggie for the relationship to continue and it was becoming clear that Frank was not sufficiently able to relate to Maggie’s feelings or needs.

To help ease this transition, as Maggie and Frank were still close, Frank was allowed to see Maggie when accompanied by a female member of staff. Maggie died several months later and Frank would continue to visit her room despite her not being there. It was decided that Frank should attend the funeral and Frank was given extra support by the care staff to help him overcome this loss.

● This case study is taken directly from a care home and is reflective of their experience; it forms part of the International Longevity Centre guide.

Points for care homes

● Some residents with dementia will have sexual or sensual needs.

● Affection and intimacy contribute to overall health and well-being for residents.

● Some residents with dementia will have the capacity to make decisions about their needs.

● If an individual in care is not competent to decide, the home has a duty of care to ensure they are protected from harm.

● There are no hard and fast rules, assess each situation on an individual basis.

● Remember to consider the impact of your own attitudes and behaviour towards older people and sex generally.

Source: The Last Taboo, A Guide to Dementia, Sexuality, Intimacy and Sexual Behaviour in Care Homes

What do you think? Join the debate on CareSpace

Keep up to date with the latest developments in social care Sign up to our daily and weekly emails

Related articles

Read about Community Care’s campaign to raise the profile of dementia care

Putting sex on the budget for the disabled