Project Summary

The Strengthening Dementia Care and Support in England (STRiDE England) project aims to understand the mechanisms that drive inequalities in dementia care and support using innovative methods to move from individual experiences to practical recommendations to tackle inequalities in dementia care at local and national levels.

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.

Findings

Publication:  Research on dementia and inequalities in care and support – a map of the terrain and discussion of key issues

This review mapped key literature on inequalities in dementia diagnosis, care and support in the United Kingdom (UK). The review found that found that most of the literature focuses on single characteristic of people (such as ethnicity), without much attention to the interactions of people’s characteristics and experiences (an intersectional approach).
Recommendations:
🔷 Dementia research would benefit from a more explicit focus on inequalities and inequities to allow drawing together of evidence across groups of people.
🔷 Research in dementia should engage with evidence concerning inequalities and inequities beyond dementia care, particularly in analysing underpinning causal mechanisms for inequalities and related solutions.
🔷 More, and more robust, evidence is needed on the intersection of people’s characteristics and inequalities in dementia care.
🔷 Stronger evidence is needed on interventions to reduce inequalities and improve access to care and achievement of better outcomes.
🔷To help bring points above together, we need high quality research on the expectations and agency of people regarding dementia and care systems. Understanding these, with an intersectional view on inequality, would enable us to better target resources to the levels and forms of support that people want to achieve equity.
🔷 National policy frameworks bearing on dementia should more explicitly adopt an inequalities perspective to address systemic issues in care systems.
🔷 Local care systems should employ an intersectional perspective on improving dementia care rather than assuming all people want similar things, even those sharing a particular characteristic.

Outputs

Clark, M., Compton, L., Salehi, N., Knapp, M. and Comas-Herrera, A. Research on dementia and inequalities in care and support – a map of the terrain and discussion of key issues. Int J Equity Health 25, 82 (2026). https://doi.org/10.1186/s12939-025-02601-4