Project Summary

Aims: First, we want to understand how the way that dementia care is organised in England today affects the experiences of people living with dementia and their families, and also how this affects their health and well being. We are particularly interested in the experiences of some people who may have more difficulties in accessing and using dementia care, perhaps because they live in rural areas with few services or because of their ethnicity or religion. Second, we want to explore how dementia policies can be made better to improve the lives of people with dementia, their families and carers.

Methods: We will analyse the documents that describe how dementia care is organised in England and how it is supposed to be provided across the country. Then we will speak to people with dementia and carers in different parts of the country to find out about their experiences of getting support, care and treatment. We will also speak to people who work in giving care or who organise care and support services. As well as finding out about current experiences, we will also ask people with dementia, carers and professionals about their views on how the local care systems can be improved in the future. We will then bring together the information we have gathered about policies, what we have learned about the experiences of individuals with dementia and carers, and also the views of professionals. We will work together to produce a plan (a kind of roadmap) on how to improve care and support for people with dementia and carers by making recommendations for change at both local and national levels. We will also identify the areas where we need more research to find ways to improve care.

People with dementia, carers and professionals will advise the project at every stage, and some will also carry out some of the research work.

Project Aims

First, we want to understand how the way that dementia care is organised in England today affects the experiences of people living with dementia and their families, and also how this affects their health and well being. We are particularly interested in the experiences of some people who may have more difficulties in accessing and using dementia care, perhaps because they live in rural areas with few services or because of their ethnicity or religion. Second, we want to explore how dementia policies can be made better to improve the lives of people with dementia, their families and carers.

Project Methods

Theory of Change:

We will develop a Theory of Change bringing together two parallel workshops, one of people with dementia, and one of family carers of people with dementia. They Theory of Change will explore what people with dementia and carers think should happen to improve the quality of life of people with dementia and carers and to reduce inequalities. This will be re-visited at the end of the project and enriched by the insights from the research findings to develop a roadmap.

Situational analysis:

We will analyse the documents that describe how dementia care is organised in England, the context in which dementia care, treatment and support is organised, funded and provided, and the current knowledge about inequalities in access to dementia care in England. We will interview key experts to help complete the overall picture of the dementia care and support landscape in England and potential sources of inequalities.

Interviews with people with dementia and family carers:

Then we will speak to people with dementia and carers in different parts of the country to find out about their experiences of getting support, care and treatment. We will be interviewing people with very diverse characteristics and situations to understand how some of these affect their experiences of accessing care, treatment and support, and also the role of different local factors. We will analyse the interview thematically, but also generate vignettes to illustrate key issues in accessing care, as well as drawing up timelines of access to different types of care, treatment and support and care and support networks.

Focus groups with local service providers and commissioners:

We will also speak to people who work in giving care or who organise care and support services. As well as finding out about current experiences, we will also ask people with dementia, carers and professionals about their views on how the local care systems can be improved in the future.

Developing a roadmap to improve care locally and nationally:

We will then bring together the information we have gathered about policies, what we have learned about the experiences of individuals with dementia and carers, and also the views of professionals. We will work together to produce a plan (building on the Theory of Change developed at the beginning of the project) on how to improve care and support for people with dementia and carers by making recommendations for change at both local and national levels. We will also identify the areas where we need more research to find ways to improve care.

Project Findings / expected Findings

We will share findings here when available.

Outputs / expected Outputs

We will write up our findings and make them available to everyone who is interested. Our reports will be freely available through university websites and other forums. We will organise open webinars every 6 months to share findings from the project. We will also listen to people with dementia and carers to hear their suggestions for how we can share and discuss our findings in other ways.