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

Patricia Masterson-Algar (), Kieren Egan, Greg Flynn, Gwenllian Hughes, Aimee Spector, Joshua Stott and Gill Windle
Additional contact information
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

IJERPH, 2023, vol. 20, issue 23, 1-15

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”.

Keywords: young person; young carer; adolescents; younger onset dementia; dementia; carer; admiral nurse; schools (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
References: View references in EconPapers View complete reference list from CitEc
Citations:

Downloads: (external link)
https://www.mdpi.com/1660-4601/20/23/7103/pdf (application/pdf)
https://www.mdpi.com/1660-4601/20/23/7103/ (text/html)

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:20:y:2023:i:23:p:7103-:d:1286452

Access Statistics for this article

IJERPH is currently edited by Ms. Jenna Liu

More articles in IJERPH from MDPI
Bibliographic data for series maintained by MDPI Indexing Manager ().