The economics of third sector provision of support services for informal carers of people living with dementia and other cognitive conditions in Wales

To increase understanding of the role and economics of the third sector in provision of support for informal carers of people living with dementia in Wales.

There are 45,000 people with dementia in Wales, and the economic cost is £1.4 billion per year (Alzheimer's Society, 2015a). The highest proportion of cost (46%) is borne by unpaid carers. Health and social care services can be fragmented and third sector organisations play an important part in supporting carers.

Improving integration across sectors is an aim of the Social Services and Well-being (Wales) Act (2014) and the National Dementia Vision for Wales (Welsh Government, 2011a). Spending of public funds needs to be centred on services that provide the most societal benefit (Treasury, 2003).

Design:

- WS1: Systematic review of the role and economics of third sector services for informal carers of people with dementia.

- WS2: Exploration of patterns and frequencies of third sector service use through quantitative analysis of a dataset containing information on contacts with health and social care professionals for a cohort of people with dementia and their carers (n=52). Costs of service use will be estimated using national unit costs (Department of Health, 2015; NHS, 2015; Curtis & Burns, 2015). Descriptive statistics will be produced e.g. median, mean, standard deviation, min, max. Box-and whisker plots will show the data distribution.

- WS3: Survey of carers of people with Huntington's disease (HD) (n=260) to identify how/why carers access services, and what the barriers are. Quantitative data will be analysed using descriptive statistics. Qualitative data will be analysed thematically. Response rates will be recorded and characteristics of responders compared to non-responders.

- WS4: Exploring how health, social and third sector organisations currently engage people with dementia and their carers using realist review (Pawson et al., 2005; Rycroft-Malone et al., 2012) and case studies (n=45, 15 per case). The case studies are a specialist HD advisory service, a post-diagnosis support service, and a community choir for people with dementia and their families.

Data collection will involve semi-structured interviews of up to an hour using an interview schedule informed by findings from the realist review. Data will be analysed using framework analysis (Ritchie & Spencer, 2002).

- WS5: Exploring social value through a Social Return on Investment (SROI) analysis (n=90, 30 per site). SROI has six stages (Millar et al., 2013; Nicholls et al., 2009): establishing scope and identifying stakeholders; mapping outcomes; evidencing and valuing outcomes; establishing impact; calculating the SROI and reporting.

- WS6: Synthesis of findings from WS1-5 to produce a set of recommendations for policy makers and service commissioners.

A family carer was involved with the development of the research questions, and they will be on the advisory panel. One more carer and two people with dementia will be recruited to the panel to ensure that public involvement is embedded in the research.

Conference presentations, open access peer-reviewed publications and reports. Findings will be shared with participants through study newsletters. Participants will be invited to present a section of the end of study symposium.