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

Author

Listed:
  • Clarissa Giebel

    (Department of Primary Care & Mental Health, University of Liverpool, Liverpool L69 3GL, UK
    National Institute for Health Research Applied Research Collaboration North West Coast, Liverpool L69 3GL, UK)

  • Caroline Sutcliffe

    (Social Care and Society, University of Manchester, Liverpool M13 9PR, UK)

  • Frances Darlington-Pollock

    (Department of Geography and Planning, University of Liverpool, Liverpool L69 3GL, UK)

  • Mark A. Green

    (Department of Geography and Planning, University of Liverpool, Liverpool L69 3GL, UK)

  • Asan Akpan

    (Department of Musculoskeletal & Ageing Sciences, University of Liverpool, Liverpool L69 3GL, UK
    Liverpool University Hospitals NHS FT, Liverpool L7 8XP, UK)

  • Julie Dickinson

    (National Institute for Health Research Applied Research Collaboration North West Coast, Liverpool L69 3GL, UK)

  • James Watson

    (Department of Geography and Planning, University of Liverpool, Liverpool L69 3GL, UK)

  • Mark Gabbay

    (Department of Primary Care & Mental Health, University of Liverpool, Liverpool L69 3GL, UK
    National Institute for Health Research Applied Research Collaboration North West Coast, Liverpool L69 3GL, UK)

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. Methods: 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 COVID-19 pandemic.

Suggested Citation

  • Clarissa Giebel & Caroline Sutcliffe & Frances Darlington-Pollock & Mark A. Green & Asan Akpan & Julie Dickinson & James Watson & Mark Gabbay, 2021. "Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic," IJERPH, MDPI, vol. 18(2), pages 1-12, January.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:2:p:686-:d:480597
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    References listed on IDEAS

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    1. Monica Cations & Adrienne Withall & Ruth Horsfall & Nicole Denham & Fiona White & Julian Trollor & Clement Loy & Henry Brodaty & Perminder Sachdev & Peter Gonski & Apo Demirkol & Robert G Cumming & Br, 2017. "Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study," PLOS ONE, Public Library of Science, vol. 12(7), pages 1-15, July.
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    Cited by:

    1. Clarissa Giebel & Sarah Robertson & Audrey Beaulen & Sandra Zwakhalen & Dawn Allen & Hilde Verbeek, 2021. "“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands," IJERPH, MDPI, vol. 18(22), pages 1-16, November.
    2. Idorenyin Imoh Udoh & Elias Mpofu & Gayle Prybutok, 2023. "Dementia and COVID-19 among Older African American Adults: A Scoping Review of Healthcare Access and Resources," IJERPH, MDPI, vol. 20(4), pages 1-15, February.

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    1. Clarissa Giebel & Sarah Robertson & Audrey Beaulen & Sandra Zwakhalen & Dawn Allen & Hilde Verbeek, 2021. "“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands," IJERPH, MDPI, vol. 18(22), pages 1-16, November.
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