Title: Dementia Friendly Communities: The DEMCOM evaluation
Funder: Department of Health and Social Care

Abstract: Background The Prime Minister s Challenge on Dementia 2020 identifies Dementia Friendly Communities (DFCs) as one way by which people living with dementia can remain active, engaged and valued members of society. DFCs include groups defined by geographical location, particular activities or large public and commercial organisations. DFCs employ a range of approaches such as working with people living with dementia to change policies, practice and services, investing in staff and volunteers to promote dementia awareness and skills in supporting people living with dementia, adapting the environment and ensuring that unpaid carers receive support. To date, evaluation has largely focused on the process of becoming a DFC and on perceived benefits. Less is known about cost, reach, relative effectiveness, how they change over time and short and long term benefits for different groups of people and their carers. Aims What are the characteristics and foci of Dementia Friendly Communities in England? What factors and preconditions for these initiatives produce positive outcomes for people living with dementia and their carers? What generalizable lessons can be drawn about the resources needed and the economic benefits of creating and sustaining Dementia Friendly Communities? Research Plan A phased multi method approach is proposed. Phase one will complete a review of online information about DFCs (e.g. local evaluations, descriptions of activities, range of groups involved), that are either recognised as having or working towards British Standards Institution accreditation or hold in common characteristics consistent with being recognised as a DFC. This will provide a comprehensive overview of the range,development process and focus of different initiatives, the population targeted, resources used to establish and maintain them and how impact is conceptualised. It will confirm the sampling frame for phase three. Phase two will use findings from phase one and earlier review work to refine a validated evaluation tool that is dementia specific and is based on work that is evaluating the impact of age friendly cities. Following expert review we will pilot the adapted tool with two dementia friendly communities. Phase three will purposively sample 4-6 DFCs that capture a range of approaches and populations served. Using the adapted evaluation tool we will interview and survey participants including people living with dementia to look at how effective DFCs are across key domains of activity and in relation to dementia specific outcomes, for example, reduction of social isolation. Analysis: DFCs will be plotted against dementia prevalence maps to assess whether DFC activity is consistent with prevalence-based need. The adapted Age Friendly cities tool and its key domains and supporting criteria will structure analysis and data synthesis. Using scenario analysis we will estimate the costs associated with identified DFC initiatives. Research team This is a multidisciplinary collaboration from across CLAHRC East of England and the NIHR School for Public Health. The team is experienced in leading dementia studies and has methodological expertise in epidemiology, qualitative methodoldogies,PPI including people living with dementia and their carers, complex evaluations, survey, case study design and economics. Impact/Influence The evaluation will establish dominant approaches to the creation of DFCs, the range of methods used, populations reached and evidence of effectiveness; barriers and facilitators to uptake; impact by setting; their potential as a resource for public health, costs and measures of economic benefit to people living with dementia, carers and local communities. A key deliverable for policy makers is a dementia specific evaluation tool that can be used to measure benefits accrued to people living with dementia and progress made by DFCs how and for whom. For those aspiring to be recognised as a DFC, the tool will help to structure strategy and operational plans.

Lay abstract: A Dementia Friendly Community (DFC) can involve a wide range of people, organisations and geographical areas. A DFC recognises that a person with dementia is more than their diagnosis and that everyone has a role to play in supporting their independence and inclusion. Usually, a DFC improves people s awareness of dementia and their skills in providing appropriate support. Such communities are important for helping people living with dementia maintain independence, feel valued and able to participate in meaningful activities. Increasingly, they can be the means by which the rights of people living with dementia are promoted to policy makers and the public. This study aims to understand how different types of DFCs work, what is needed to sustain them and how they help different groups of people living with dementia and carers to live well. Approximately 140 plus dementia friendly communities across the country are formally recognised as working towards being dementia friendly. This study will undertake: A review of online information and related documentary evidence to establish how they have been implemented, their focus, approach, who is involved and evidence of benefit and for whom. This will demonstrate the range of achievement, populations reached and resources used to implement and sustain dementia friendly communities. Using a bespoke dementia sensitive tool, originally developed to evaluate age friendly cities, and informed by the review findings, we will study in depth up to 6 DFCs, that in different ways are seen as successful. Using interviews, documentary review, surveys and discussions including people living with dementia, we will evaluate their work in key areas of activity. These include the costs of running and being involved in a dementia friendly community, evidence of benefit, the involvement of people living with dementia and carers, and wider public engagement. The evaluation will make clear what needs to be in place for a community to become dementia friendly, how to measure their impact on people living with dementia, carers and the wider benefits of different approaches over time. This will provide an evidence based evaluation framework to inform how current and future initiatives are approached and funded.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL