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Health inequalities in the care pathways for people living with young- and late-onset dementia in Liverpool

Project statusComplete
Contact Clarissa Giebel
Host institution University of Liverpool
Team members Dr Clarissa Giebel; Dr Frances Darlington-Pollock; Prof Mark Gabbay; Caroline Sutcliffe; Dr Mark A Green; Dr Asan Akpan; James Watson; Julie Dickinson
Funding information (if funded) People with dementia need easy access to a number of post-diagnostic support services. This includes accessing support groups, paid carers, hot meals delivered to the home, or going to day care centres. However, these can be difficult to access depending on whether they come from a more disadvantaged or more affluent background. Specifically, little is known about the individual care pathways of what and when people with dementia access both in terms of dementia-specific services and general health care services, such as going to see their doctor or going to the hospital. Therefore, the aim of this study is to explore the experiences of people with young-onset dementia and late-onset dementia living in the community in Liverpool on their care pathways, and whether they are experiencing any health inequalities in accessing health care services.
Project Summary

We conducted 15 interviews, some with family carers, some with people living with dementia, and some with both, between January 2020 and May 2020. Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID19 pandemic.

Outputs / Expected Outputs

Giebel C, Sutcliffe C, Darlington-Pollock F, Green MA, Akpan A, Dickinson J, Watson J, Gabbay M. Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic. International Journal of Environmental Research and Public Health. 2021; 18(2):686. https://www.mdpi.com/1660-4601/18/2/686

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Health inequalities in the care pathways for people living with young- and late-onset dementia in Liverpool