eprintid: 10184348 rev_number: 6 eprint_status: archive userid: 699 dir: disk0/10/18/43/48 datestamp: 2023-12-21 08:30:01 lastmod: 2023-12-21 08:30:01 status_changed: 2023-12-21 08:30:01 type: article metadata_visibility: show sword_depositor: 699 creators_name: Masterson-Algar, P creators_name: Egan, K creators_name: Flynn, G creators_name: Hughes, G creators_name: Spector, A creators_name: Stott, J creators_name: Windle, G title: Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers ispublished: pub divisions: UCL divisions: B02 divisions: C07 divisions: D05 divisions: F66 keywords: admiral nurse, adolescents, carer, dementia, schools, young carer, young person, younger onset dementia, Humans, Caregivers, Dementia, Data Collection note: © 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/). 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”. date: 2023-11-23 date_type: published publisher: MDPI AG official_url: http://dx.doi.org/10.3390/ijerph20237103 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2134407 doi: 10.3390/ijerph20237103 medium: Electronic pii: ijerph20237103 lyricists_name: Stott, Joshua lyricists_name: Spector, Aimee lyricists_id: JSTOT61 lyricists_id: AESPE69 actors_name: Flynn, Bernadette actors_id: BFFLY94 actors_role: owner funding_acknowledgements: NIHR130914 [National Institute for Health Research] full_text_status: public publication: International Journal of Environmental Research and Public Health volume: 20 number: 23 article_number: 7103 event_location: Switzerland issn: 1661-7827 citation: 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 <https://doi.org/10.3390/ijerph20237103>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10184348/1/ijerph-20-07103-v2.pdf