Masterson-Algar, P;
Egan, K;
Flynn, G;
Hughes, G;
Spector, A;
Stott, J;
Windle, G;
(2023)
Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers.
International Journal of Environmental Research and Public Health
, 20
(23)
, Article 7103. 10.3390/ijerph20237103.
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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”.
| Type: | Article |
|---|---|
| Title: | Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers |
| Location: | Switzerland |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.3390/ijerph20237103 |
| Publisher version: | http://dx.doi.org/10.3390/ijerph20237103 |
| Language: | English |
| Additional information: | © 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
| Keywords: | admiral nurse, adolescents, carer, dementia, schools, young carer, young person, younger onset dementia, Humans, Caregivers, Dementia, Data Collection |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > Clinical, Edu and Hlth Psychology |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10184348 |
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