Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

Giebel, Clarissa ORCID: 0000-0002-0746-0566, Sutcliffe, Caroline, Darlington-Pollock, Frances, Green, Mark A ORCID: 0000-0002-0942-6628, Akpan, Asan, Dickinson, Julie, Watson, James ORCID: 0000-0002-0238-1906 and Gabbay, Mark ORCID: 0000-0002-0126-8485 (2021) 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, 18 (2). pp. 1-12. ISSN 1661-7827, 1660-4601

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Abstract

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Meth ods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: 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. Discussion: 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.

Item Type:	Article
Uncontrolled Keywords:	young, and late-onset dementia, health inequities, care pathways, health and social care services, community-based services
Depositing User:	Symplectic Admin
Date Deposited:	11 Jan 2021 09:28
Last Modified:	16 Jun 2026 13:48
DOI:	10.3390/ijerph18020686
Related Websites:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3113159
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