- Care home staff have expressed concern and uncertainty about residents’ sex and intimacy needs.
- Alzheimer’s Society has worked with care homes to find a creative way to tackle the taboo.
- New ‘Lift the Lid’ workshops help staff to better understand and support residents’ needs.
In your working day, how often do you talk about sex and intimacy? The answer is probably very little, but that has to change. When we combine sex and intimacy with dementia and care homes, countless questions arise that many people don’t know how to answer or don’t even want to think about. My team at Alzheimer’s Society recently set out to change that and find a way of tackling the taboo of sex, ageism and dementia in order to better meet the needs and rights of people living with dementia in care homes.
Relationships in care homes
Imagine you were living in a care home instead of working there. It is likely that you would still want to continue with every aspect of your life as you had before – to hold hands or cuddle with a loved one, to share a bed and maintain a sex life with a partner, to seek a new partner if single. These are things that many of us take for granted, but for people with dementia in care homes it can be a very different situation. I have heard some stories where this has been enabled. But more often than not care home staff get stuck in a cycle of concern about mental capacity and risk aversion which, while completely understandable, can restrict people with dementia’s privacy and choice.
The risk and effect of not addressing needs regarding sex and intimacy have not been widely explored in practice, so my team visited care homes around the country to really immerse ourselves in understanding this taboo. It was apparent from the outset that the needs and rights to sex and intimacy are too often overlooked in the lives of people with dementia. Insight from care home staff and managers revealed that some had not considered residents' sex and intimacy needs at all, while others didn’t know how to broach the subject or lacked clear and consistent guidance. We had very honest feedback, ranging from ‘I can’t begin to think about sex and older people’ to the other end of the spectrum: ‘This is a person’s life and this is their home and they have rights.’ Views on the topic tended to be personal, rather than referencing set care home values and principles.
Many care home staff expressed concern and fear about the consequences of in-the-moment situations, what they might see and what they might do. We often hear the more dramatic tales, like relationships forming between residents when an existing spouse is living outside of the care home, or people displaying sexual behaviour outside the boundaries of privacy. But while these things do happen, there is another perhaps more common side to the issue: where sex and intimacy aren’t talked about at all and people’s needs aren’t recognised. One member of staff perfectly summed it up in saying, ‘I've not seen great interest from residents in sexual relationships, but is it because we're not asking the question?’
Meanwhile, residents told us things like ‘I still have needs, but I don’t have anyone to cuddle or kiss’, and relatives said things like ‘I would like intimacy to continue – holding hands, a kiss on the cheek, having a cuddle on the bed together, these things have always been important to us’. We met a lady with dementia who has been married for 35 years and explained their living situation has changed but their relationship hasn’t. We discussed things like a ‘do not disturb’ sign and pushing two single beds together, but her ideal scenario was just for the care home to feel like their home. Navigating these sensitive, emotional issues can be as much of a challenge as the more sensationalist stories.
‘Lift the Lid’ tool
Care home staff are best placed to tackle this challenge and make a real difference to the lives, loves and wishes of people with dementia in this space, so my team and I developed tools to help them do that. We worked with 10 care homes to create ‘Lift the Lid’. This is a workshop in a box with three creative activities, to challenge current behaviour and help agree shared values and actions for staff to take. We’re all different, so there is no 'one size fits all' solution; it’s more of a flexible tool to give staff the opportunity to talk things through in a professional and constructive way.
‘Lift the Lid’ is for all care home staff, regardless of seniority or role. It’s suitable for two to 10 participants, and is designed to be run as a two- or three-hour workshop. It can be facilitated by a home manager or senior member of the care team as appropriate, but can be split into three parts if needed. While it is mainly designed for care home staff, some of the activities – such as a true or false game to challenge perceptions – could be adapted for residents and their families. It’s particularly valuable for care homes where residents are living with dementia, but can easily be applied more broadly.
Creating a sex and intimacy policy
Creating and implementing a sex and intimacy policy will mean care home staff feel confident in demonstrating holistic person-centred support, and best practice within Care Quality Commission guidelines on relationships, equality and diversity. Feedback from many care home staff was that they wanted to get this right for residents but didn’t know where to start, so ‘Lift the Lid’ supports and empowers them to do that in a creative and collaborative way. It can also help care homes to achieve outstanding ratings as it’s a way of demonstrating innovation, care quality, responsiveness and commitment to residents’ human rights.
We launched ‘Lift the Lid’ at the UK Dementia Congress in November and the response so far has been brilliant; it’s already been shortlisted in the National Dementia Care Awards 2018.
There is a long and complicated journey that care homes need to embark on to support residents’ needs in respect of sex and intimacy – seeing this as part of residents’ rights and identity, understanding its role in well-being and person-centred care, feeling confident starting these sensitive conversations, having the processes in place to manage situations in a respectful and dignified way, and proactively supporting residents in this space with shared values and agreed actions – and I hope that ‘Lift the Lid’ can help many more people to take the first step on that road.
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