Live more: shifting support upstream for people and families living with dementia

By Bernie Enright, Executive Director, Adult Social Care, Manchester City Council & Ewan King, Chief Executive, Shared Lives Plus

In Greater Manchester (GM) we’re about to begin an exciting experiment together, drawing on the Accelerating Reform Fund.  All of the region’s 10 local areas, with the support of the Mayor, Shared Lives Plus, GM ADASS and Dementia United, will invite people with dementia and their families to test out Shared Lives day support, upstream of where people are typically eligible for adult social care. Working with the people and families who take part, we’re then going to measure what impact this has on their lives and wellbeing and for our health and social care system to establish if it offers a viable and cost-effective model of proactive, targeted prevention and early action. The programme embodies the accent on prevention in the recently-launched NHS 10 Year Health Plan and the government’s public service reform principles.

Shared Lives involves people looking for some support to live their life being carefully matched by a local Shared Lives scheme with a carer to offer that person-centred, relational support. Together, they share family and community life, from the base of the Shared Lives carer or supporter’s home.  This can include living in the Shared Lives carer’s home on a long-term basis, a short break or spending time at the carer’s home during the day doing the things people enjoy doing together.  The largest group of people to draw on Shared Lives presently are people with learning disabilities, but several Shared Lives schemes across the UK, including in Greater Manchester, do already successfully reach people living with dementia and their families through day support, albeit mainly after people are deemed Care Act eligible.

For example, in February 2024, a couple in Bury in Greater Manchester were referred to the Shared Lives scheme Persona.  J, who has dementia, is talented and keen on DIY, in particular carpentry, and his wife had found a local support group that focused on DIY projects.  Following the first session the group said they felt J would need some support to attend and take part, but as the group was exclusively targeted at men, she would not be able to do this herself, and doing so would in any case have deprived her of the break from supporting her husband that it offered.  Persona was able to match J with a Shared Lives carer who shared J’s passion for DIY and the following week J went back to the group with his Shared Lives carer. Their friendship has gone from strength to strength. Over the last year and a half not only have they been attending the men’s group they have made the most beautiful planters for services across Bury.

While such support is valued and valuable, we believe that is an opportunity to truly optimise Shared Lives by meeting people and families earlier to help people to stay active and connected to the places, people and things that sustain health and wellbeing. That’s because in common with many parts of our country, people living with dementia and their families across GM are struggling to get by with little support from statutory services until they reach crisis point. These crises are often met with avoidable, and too often avoidably prolonged, hospital admissions, that can harm people and see their need for care and support escalate significantly.  Breaks that are available for family carers typically take the form of ‘respite’ in a residential care home, often only once the impact of a person’s dementia has become significant and when a family carer cannot cope any longer, while day support, where available, is commonly in a day centre of some kind, exclusively for people with dementia, which many people don’t want to go to.  This situation is not only harmful to the people and families involved, it is piling further pressure on our health and social care system.  For example, at least 25% of general hospital beds are occupied by people living with dementia and on average people with dementia stay more than twice as long in hospital then other patients aged over 65.

The Live more programme will be nested in Greater Manchester’s Live Well Dementia strategy, with the outcomes of that strategy forming the measurement framework we’ll use to evaluate the programme.  

People with dementia and their families are central to the design, implementation and evaluation of the programme.  That includes those people and families who will test out the support and the Shared Lives supporters alongside them.  We’ll be co-designing an approach that supports people to journal and record their experience of the support and their perspectives on its value and impact.  Alongside economic and other analysis this will allow us to build a comprehensive picture to inform our learning and decisions about next steps.

Shared Lives Plus is seeking opportunities to test out this model of early targeted support in other places too, to help grow the evidence of its value and impact, and has been awarded some philanthropic support to do so. Do get in touch if you’d like to discuss how your areas can get involved: Ewan King – CEO Shared Lives Plus, ewan.king@sharedlivesplus.org.uk

We hope that this modest, targeted investment in reaching people earlier and supporting them to live more through staying active and connected to the people, places and things that matter to them can deliver a win-win: improving lives while helping place our health and care system on a more sustainable footing.  Watch this space! 

Steph Butterworth, Chair of GM ADASS shared “We’re delighted to be working with Shared Lives Plus and our Shared Lives schemes across Greater Manchester to offer this new support for people living with their dementia, and their families. We look forward to learning about the benefits that this will have and how we can build this into longer-term prevention ambitions. GM ADASS give their full backing to this project.”