Neighbourhoods and Dementia: A mixed methods study

Dementia is often presented as a global issue with substantial economic consequences for all countries and societies providing diagnostic and/or supportive services. Whilst we believe this is necessary and important information, in our 5-year study we want to celebrate the achievements, growth and contribution that people with dementia and their carers make to society. To do this, we are putting the local neighbourhood and networks in which people with dementia and their carers live and belong at the centre of our work. We have designed a study on neighbourhood living that has 4 inter-linked work packages (WPs), an international partner , the Center for Dementia Research [CEDER] at Linköping University, Sweden, and strong user involvement through the EDUCATE and Open Doors groups [Greater Manchester, England]; The ACE Club [Rhyl, North Wales]; and the Scottish Dementia Working Group [Glasgow, Scotland]. In the UK our academic partners are situated in Manchester, Salford, Stirling, Liverpool and London and we have third sector involvement through the Deaf Heritage Project at the British Deaf Association, as well as a range of project partners which includes the North West People in Research Forum, the Citizen Scientist initiative and a Community Integrated Company that supports people with dementia through accessible technology [Finerday]. As this is a complex set of networks based around a neighbourhoods theme, each WP will use different research methods and partners to meet their primary aims and objectives. WP1 is a secondary analysis of the English Longitudinal Study of Aging database which will compile Neighbourhood Profiles that will be available for the whole country; these Profiles will include information on cognitive risk factors and clusters of population; WP2 will develop a set of core outcomes measures in dementia that will involve people with dementia and their carers in deciding what measures and priorities are important for them; WP3 will explore what makes a dementia friendly neighbourhood and will take place in Stirling, Salford and Linköping; WP4 has 3 interventions representing various stages of the Medical Research Council's complex interventions framework. Intervention 1 will be a full RCT of an educational intervention for general hospitals that several members of the project team have developed and piloted over the last 2 years. In this study, we want to find out if the educational intervention results in people with dementia leaving hospital for their neighbourhood home sooner, but with high levels of satisfaction. Interventions 2 and 3 are pilot trials. Intervention 2 will be conducted in Sweden and Manchester, UK and will use technology to help couples, where one person has a dementia, to better self-manage the condition and, more importantly, their relationship. In intervention 3, we are looking at the diversity of a neighbourhood and will develop the first digitalised life story intervention in the world for Deaf people (BSL users) who live with dementia. This will be the first intervention for this group in the world. In this programme of work we will develop a user research programme as some people with dementia have told us that they would like to work alongside the research team as co-researchers. We will therefore appoint a PPI co-ordinator for the duration of the study with a responsibility for identifying co-researcher training needs, running a regular co-research programme, mentoring co-researchers, ensuring user goal preferences are met and facilitating user dissemination. Through the implementation of a neighbourhood approach each WP will promote closer relations and working between professionals, lay people and people living with dementia. This study will also contribute to the currently limited evidence base for dementia friendly communities and provide knowledge and insights to support a robust theoretical framework of neighbourhood work that will have international scope and relevance.