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.

[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.