People living with dementia and their carers in socio-economically disadvantaged areas experience significant barriers in accessing and navigating primary care, a new study led by University of Manchester has found.
Poorer communities often face additional difficulties to accessing consistent, proactive and clearly defined dementia support within general practice.
Based on 20 in-depth interviews with people with dementia and their carers, the researchers highlight how socioeconomic disadvantage adds additional complexity to their healthcare.
Funded by the National Institute for Health and Care Research (NIHR ) School for Primary Care Research, the study is published in the British Journal of General Practice.
Participants were recruited from areas ranked in the lowest two quintiles of the Index of Multiple Deprivation, ensuring that voices often absent from dementia research were highlighted.
The researchers analysed the interviews using reflexive thematic analysis, a qualitative research method used to identify, analyse, and interpret patterns of meaning.
Our work shows that people with dementia in disadvantaged areas are navigating a system that often feels fragmented, reactive and unclear, at a time when stability and continuity matter most."
It revealed four interconnected themes that shaped participants’ experiences:
- Proactive continuity of care is essential to helping people with dementia retain a sense of identity as the condition advances.
- Formal support often falls away just as care needs escalate, leaving families feeling abandoned at the most critical stages.
- Widespread difficulty navigating what respondents see as a fragmented and often bewildering primary care system.
- Uncertainty across general practice about who is responsible for ongoing dementia support, with many patients and carers unclear about where the condition sits within routine care.
While views varied, some participants felt local resources and individual social networks influenced the quality of care they received.
The findings suggest that clearer communication, proactive follow-up and more consistent relationships with primary care professionals could significantly improve the experiences of people with dementia.
The study also emphasises the need for a clearer definition of primary care’s role in dementia management, particularly as policy discussions increasingly point toward primary care-led post-diagnostic support.
Lead researcher Dr Charlotte Morris from The University of Manchester said: "It was a real privilege to interview the people with dementia and the carers for this study, and I’m very grateful to them all.
"Our work shows that people with dementia in disadvantaged areas are navigating a system that often feels fragmented, reactive and unclear, at a time when stability and continuity matter most."
"By strengthening proactive contact and clarifying who is responsible for dementia care, primary care services can make a profound difference to patients and families.
"Addressing these gaps is essential to ensuring equitable, person-centred dementia care across the UK."
Co-author Darren Ashcroft , director of the NIHR Greater Manchester PSRC and professor at The University of Manchester, added: "The themes we identified are an important insight into how people with dementia feel about the healthcare they receive from their primary care teams.
"Understanding this is an important step to improving the post-diagnostic healthcare we offer for people with dementia in the community."
The paper Experiences of primary care for people with 2 dementia from socio-economically 3 disadvantaged areas: a qualitative study, published in the British Journal of General Practice is available here DOI: https://doi.org/10.3399/BJGP.2025.0407
