Title: Short breaks for people living with dementia and their carers: exploring wellbeing outcomes and informing future practice development through a Social Return on Investment approach
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Dementia is a global challenge [30]. For carers supporting people living with dementia, short breaks are an essential source of support [31] and without these, carers’ physical and mental health can deteriorate [4], increasing the risk of the person living with dementia being hospitalised or institutionalised [32]. This is at considerable cost to families and the public sector. Alternative short break approaches are recommended [6] but there is little research demonstrating how to plan, commission and deliver these [32, 25]. TRIO is a day support service based on the Shared Lives model that enables carers to have time away from their caring role, integrates people living with dementia into their local community and establishes relationships between people based on mutual interests [1]. There is some evidence that this community-based model is lower cost than traditional day care services [14] and the approach is consistent with Welsh Government policy (e.g. [6]). Research has not explored the impacts of this type of alternative short break. Using TRIO as an exemplar service, this research investigates: • What elements of TRIO are important for achieving impact for people living with dementia and their carers •Using a Social Return on Investment (SROI) analysis, the added social value achieved for these individuals and the Shared Lives carers (called TRIO companions) providing the breaks Research plan SROI is a cost-benefit analysis which considers a broader concept of value, consistent with Treasury guidance [33], which recommends that evaluations consider “all impacts - social, economic, environmental, financial, etc.” from a multi-stakeholder perspective. The project shall employ mixed methods and be conducted in three interrelated stages: •Rapid review of the literature to develop an initial logic model •Interviews with a range of TRIO stakeholders to refine the logic model •A SROI analysis completed with a current TRIO cohort comprising people living with dementia, carers and TRIO companions The SROI analysis shall follow the Social Value UK guide methodology for SROI analysis [34] and include cross-sectional data collection with standardised and bespoke outcome measures, supplemented with routinely collected service data. The study developed logic model shall inform the outcomes captured, enabling emergent outcomes to be considered. Potential benefits Findings shall support short break policy and practice development, which in turn shall support the wellbeing of people living with dementia and their carers. •Policy: Findings from this exemplar service shall inform the commissioning of short break services for people with complex support needs and their carers. Findings shall also inform the implementation of Welsh Government priorities relating to preventative, personalised and outcome focused provision [6] and carers achieving a life alongside caring [11]. Findings additionally speak to the mandate from the Older Peoples’ Commissioner to ‘rethink respite’ [4]. • Practice: Findings shall inform the delivery and evaluation of short breaks for carers and people living with complex needs. The Shared Lives model is international, and findings shall have relevance outside Wales. • Wellbeing: Through driving forward the improvement agenda for carers, impactful dissemination shall enhance the provision of effective short breaks that realise wellbeing outcomes for carers and individuals living with dementia [35].

Lay abstract: We explore the outcomes of a Shared Lives day support service called TRIO for people living with dementia, their carers and the Shared Lives carers (called TRIO companions). TRIO provides carers and people living with dementia a short break. Provided in the community, it is an alternative to traditional, day and residential respite care services. A health economics approach called a Social Return On Investment analysis shall explore the added social value of these short breaks and how this is achieved. We will use interviews and questionnaires to collect data for the analysis. People living with dementia and their carers can benefit from short breaks. Short breaks can support carer wellbeing and prevent or delay people living with dementia moving into care homes. As the number of people living with dementia continues to rise, short breaks are an important part of keeping people well and living in the community - this is a key policy objective for the Welsh Government. Policies in Wales emphasise the importance of developing new ways to support people living with dementia and their carers. In the TRIO service two-to-three people living with dementia sharing similar interests are matched with a TRIO companion with these interests. People meet in the community or the home of the TRIO companion on a weekly basis. They are supported to engage in activities meaningful to them and to take part in community groups. There is evidence that the Shared Lives model supports older adults but research has not explored the impact of Shared Lives short breaks on people living with dementia and their carers. Findings from this project shall help policy makers consider if implementing this model of support more widely would be a good investment. We consulted with various interested individuals when creating our project ideas and plans, including the all-Wales Carers Officers Learning and Improvement Network (COLIN), the United Kingdom Research and Practice Development Group on short breaks and members of the Centre for Ageing and Dementia Research Public Participant Involvement group, which includes people living with dementia and carers. These contributors have shaped our research questions and design. Contributors have consistently emphasised the importance of the project, including the need to explore the costs and outcomes of short breaks. Going forward, we shall implement the UK National Standards for Public Involvement by inviting key people to join a project advisory group, including people living with dementia, carers, TRIO companions and the service providers. We shall offer support so people can meaningfully contribute and shall encourage individuals to join the Wales Public Involvement community to access wider support and training. The providers of TRIO are our research collaborators. Their involvement ensures that the findings shall inform the future development of Shared Lives and other types of short breaks. Our links with the COLIN and the UK Research and Practice Development Group on short breaks, which is associated with both Eurocarers and the International Short Breaks Association, enable us to share the research findings in the UK and worldwide. The Principal Co-applicant (DS) is a member of the Welsh Government Ministerial Advisory Group on Carers: this is an additional route for our findings to inform short break policy.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;6.6 PSYCHOLOGICAL AND BEHAVIOURAL;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL;GENERIC HEALTH RELEVANCE