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Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

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  • Patricia Masterson-Algar

    (School of Medical and Health Sciences, Bangor University, Bangor LL57 2EF, UK)

  • Kieren Egan

    (Department of Computer and Information Science, University of Strathclyde, Glasgow G11 XH, UK)

  • Greg Flynn

    (School of Medical and Health Sciences, Bangor University, Bangor LL57 2EF, UK)

  • Gwenllian Hughes

    (School of Medical and Health Sciences, Bangor University, Bangor LL57 2EF, UK)

  • Aimee Spector

    (Department of Clinical, Educational and Health Psychology, University College London, London WC1E 6BT, UK)

  • Joshua Stott

    (Department of Clinical, Educational and Health Psychology, University College London, London WC1E 6BT, UK)

  • Gill Windle

    (School of Medical and Health Sciences, Bangor University, Bangor LL57 2EF, UK)

Abstract

Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews ( n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a “whole-family approach” (as a pathway to identification), “not a carer” (self/family identification), a postcode lottery (high variability of support services), tailored support that is “fit for purpose”, and the “power” of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not “fit for purpose”.

Suggested Citation

  • Patricia Masterson-Algar & Kieren Egan & Greg Flynn & Gwenllian Hughes & Aimee Spector & Joshua Stott & Gill Windle, 2023. "Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers," IJERPH, MDPI, vol. 20(23), pages 1-15, November.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:23:p:7103-:d:1286452
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    References listed on IDEAS

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    1. Elena Guggiari & Marianne Fatton & Saul Becker & Feylyn Lewis & Giulia Casu & Renske Hoefman & Elizabeth Hanson & Sara Santini & Licia Boccaletti & Henk Herman Nap & Valentina Hlebec & Alexandra Wirth, 2023. "Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded “ME-WE” Online Survey Study on Adolescent Young Carers in Switzerland," IJERPH, MDPI, vol. 20(5), pages 1-17, February.
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