INTRODUCTION

‘Sex and intimacy’ in care homes is an often taboo and neglected subject that has a significant impact on the wellbeing of people living with dementia and their families. Our organisation was engaged to help a non-profit organisation within the healthcare sector with the following objectives:

1. To create new products and services that help people affected by dementia in relation to sex, intimacy and relationships
2. To embed a new innovation process within our client’s new innovation team and demonstrate the approach to others within their organisation

As the project progressed, we narrowed our focus into helping care homes better support their residents with dementia when it comes to sex and intimacy. The outcome of the project was Lift the Lid – a workshop in a box with all the tools needed for care homes to run a creative challenge with their staff to:

• Challenge perception around sex, intimacy and relationships and people affected by dementia
• Provide a framework for respectful management of in-the-moment situations
• Align care home staff on the shared values of the home and create an action plan for how they can provide better care for their residents

PROCESS

To deliver the project and ensure we achieved the second objective, we worked very collaboratively with the client - aiming to teach them through doing. We formed a team of 6 members from their new Innovation team and led and guided them through the process. We
followed our 4-stage L.I.F.E. ™ process to tackle this project.

Stage 1: Learn - The initial challenge our client wanted to tackle was too broad. As such, we led them through a scoping workshop to better define their challenge and target audience they wanted to reach. Together, we interviewed a variety of people across their organisation, and conducted desk research on multiple areas of focus and used those findings to generate a list of smaller challenges and opportunities within this space.

Output: A well-defined, aligned upon challenge for the project – helping care home staff support people affected by dementia around sex, intimacy and physical relationships.

Stage 2: Investigate - To begin our ‘Investigate’ stage, we identified the key stakeholder groups we needed to engage to better understand the challenge and how to solve it. From each stakeholder group, we identified what we needed to learn, who we needed to engage/ interview and our hypotheses around the barriers of the key audiences.

We conducted 1-1 interviews with 20 experts in the topic from a variety of organisations operating in this space. This included an especially valuable interview with Danuta Lipinska, the author of ‘Sex, Dementia and Wellbeing’ and renowned as one of the world’s leading experts on the subject. We regularly were referred to one quote in particular from Danuta’s book when we were framing our project to these experts: ‘The right to freedom of expression, including sexuality is a basic human right and requires inclusion in the lives of all men and women, irrespective of age, diagnosis, brain function or sexual identity.’

We also interviewed 37 members of our target audience, 11 people affected by dementia and 26 care home staff across the UK. Through our interviews with care home staff, we formulated a 3-stage journey care homes needed to go on in order for this problem to be addressed:

1. AWARE - seeing sex and intimacy as an important element of residents’ lives & identity and a contributor to wellbeing
2. EQUIPPED - having the tools and processes in place to begin conversations and manage situations
3. SUPPORTING - proactively supporting residents in this space

The interviews with care home staff also helped us to realise what was happening currently within care homes. In most cases there was a complete lack of training or guidance in what to do when they encountered situations around sex and intimacy. One care home worker we spoke to said, “When it comes to sex and intimacy for residents with dementia, I worry what I’ll see, how I’ll feel and what I’ll do". In most cases, no action at all was necessary but due to their uncertainty the most common reaction was ‘panic and paperwork’. In extreme cases they were separating residents from their partners, which following the quote from Danuta’s book could be seen as a contravention of their human rights.

Output: We synthesised the learnings from our expert interviews into five key insights. These were used as platforms to develop solutions, and they included quotes from our participants as well as ‘How Might We’ questions to solve the challenges they faced.

Stage 3: Find - Moving into the ideation phase, we ran a 1-day workshop with over 20 stakeholders from across the charity as well sa people affected by dementia and care home staff to design solutions based on the insights from Stage 2. 70 solutions were developed in that workshop, and over the following week the project team prioritised two ideas they felt had
the most potential. These were:

1. Lift the Lid - a workshop in a box designed to help (a) challenge perceptions (b) build values and (c) embed a new culture
2. Follow your Heart - a simple framework on a poster that would be put up in the staff room and other relevant places within the care home. ‘HEART’ was used as an initialism to explain to staff how to decide on the most appropriate course of action to take in any given scenario.
   
   

• H appiness - are they happy, are there signs of distress?
• E nvironment - do they need privacy, is the space supportive of their needs?
• A ssess - is it sex or intimacy
• R espect - think about the most sensitive and least intrusive action to take
• T ake action - based on the above, either (a) do nothing (b) offer help or (c)
  intervene and consider safeguarding

Output: At the end of the sprint, we designed a dragon’s den style panel made up of 4 experts and a former carer of their partner living with dementia. The 2 solutions were pitched to the panel, and they liked both ideas so much they chose to take both ideas forward for further development and prototyping.

Stage 4: Experiment - We started by creating a variety of paper prototypes to help us test the key components and features of each idea with care home staff. We took our prototypes to 5 care homes across the UK, which provided us with detailed user insight that helped us to iterate each product further. The key takeaway from this initial round of user testing was that neither idea was likely to have a big impact on their own, however, combining them would create a very effective tool. As such, we decided our next iteration would include the poster as a resource within the workshop box. We also created a new activity specifically designed to introduce the poster and allow them to practice using it. We kept the name Lift the Lid based on user feedback.

Following the paper prototypes, we created a minimum viable product for the hybrid idea. We built a very basic version of the box and its content, and using our contacts from the expert interviews in the Learn phase, we found 10 care homes who were willing to try it out. We visited 3 care homes and observed them running their workshop, and for the remaining 7 care homes, we created 2 detailed feedback questionnaires, one for the care home manager and another for the care home workers who attended the workshop.

We had a total of 76 feedback forms completed and returned. We also conducted face to face interviews with the care home managers of the 3 homes we observed using the MVP.

The feedback was overwhelmingly positive. It was interesting to observe in the care homes that we visited that in many cases staff’s hunches about the best of action were often correct. It was not that they did not know what to do, the real problem was that they just needed reassuring their actions were appropriate. Watching the staff having discussions and sharing stories about the different scenarios they encountered helped them to feel confident in following their instinct, whilst also providing some basic training to guide them and a framework to refer back to whenever they felt unsure.

Output: We used our learnings from the first round of paper prototyping into a new set of ‘How Might We’ challenges, which were used to iterate our ideas and build the working MVP to be tested. We also created a detailed feedback form that the charity could use with other care homes who used the product in the future.

IMPACT

The feedback surveys captured a mixture of qualitative and quantitative feedback from care home staff to measure the before-and-after impact of running a Lift the Lid workshop. This is what we heard:

• I know exactly what to do in in-the-moment situations that I come across that are of a sexual or intimate nature.
• I know how and where to find more information around the topic of sex and intimacy when it comes to my residents with dementia.
• I strive to prevent any forms of intimacy amongst residents to avoid risks and concerns being raised by the partner or families.

Knowing this is something we can talk about.

• “Until it was brought up with this session, I never would have thought this is something we have to speak about. This session opens your mind to their needs and what you can say. I think I could now talk about it -- just because you’re old doesn’t mean… you still want to have relationships.” - Unit Manager
• “Lift the lid on sex and intimate relationships normalises a conversation that is needed but kept hidden, it is an important part of our residents lives.” - Nurse and Care Assistant

Putting residents first.

• “Something I’d now do differently is the family side of things – used to follow what the family wanted, but now following what residents want.” - Senior Support Worker

The format makes an intimate subject very accessible.

• “It helps you to be open, honest, brings your team together. It is quite an intimate subject, but in a safe environment and with the tools, Lift the Lid means even the quietest of members were engaging. It makes you engage, the games. Everyone got something out of it.” - Care Home Manager
• “The activities in the box give staff an understanding, ability and confidence to respond in an appropriate and respectful manner, and to not react out of embarrassment and fear – this should be about dignified care and this will help us to provide that’ - Unit manager

There’s nothing like this currently available.

• “I think it’s something that needs discussing and needs incorporating into the training package for all the staff. They do so many e-learning things, but nothing quite like this.” - Care Home Manager

Following this project, we also spoke to the Directors and Dementia leads at 3 of the UK’s largest care home chains, who were all interested in rolling out Lift the Lid. They said: “I will share this with the Clinical Governance Committee in August and talk next steps...my vision is a 3 stage rollout - regional, national, international. If it works in UK why couldn't it work in Australia?”

With such great positive feedback, our client decided to go forward with launching the product. They launched Lift the Lid in November 2018 at the Dementia Congress in Brighton. The charity sells Lift the Lid online for £38, which allows them to provide a sustainable service without being reliant solely on fundraising income. Since then, they have received 70 orders for Lift the Lid, which have been delivered to care homes across the UK. Lift the Lid was also a finalist for JDC Dementia Care Award in 2018.

Further, the Innovation Team at the charity has also successfully implemented the L.I.F.E.™ process and used it to complete a number of new cycles focussed around a variety of topics that affect people affected by dementia. They said: “It was great to be introduced to an innovation model that we hadn’t worked with before and having [consultants] guide us through each stage...Looking back, it is amazing to see the depth and results of the work we achieved in such a short space of time. The audience-led approach really aligned with our values as a team, and since Lift the Lid, we’ve been applying the LIFE model to some of our innovation work, including LGBT+ and dementia, uniting with General Practice, and partnering with the RAF association on caring for someone with dementia from a distance."

CONCLUSION

We set out to design a new product with the potential to improve the lives of people living with dementia and their families. With Lift the Lid, we were able to help care home workers to speak openly about this topic and to have the tools and confidence to appropriately support their residents. Lift the Lid has received great feedback and success since launch has reassured the project team that we have made a dent in achieving that goal.