School of Medical and Health Sciences, Bangor University, Bangor LL57 2EF, UK.
Department of Computer and Information Science, University of Strathclyde, Glasgow G11 XH, UK.
Int J Environ Res Public Health. 2023 Nov 23;20(23):7103. doi: 10.3390/ijerph20237103.
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 ( = 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".
年轻痴呆症照顾者（YDCs）很少接受适当的培训和支持。他们的可见性和识别度仍然非常低，因此，正在制定的支持计划无法覆盖到他们。本研究探讨了 YDC 识别途径的成功（或失败），以及实施这些途径的障碍和促进因素。采用探索性定性方法，借鉴了 YDC 父母、痴呆症研究人员、痴呆症/年轻照顾者领域的专业人员和年轻成年照顾者的经验。数据收集涉及半结构化访谈（= 17）和为期 2 小时的参与式研讨会，以讨论和批评初步主题，并探讨增加 YDC 可见性和识别度的策略。确定了五个主题：“全家庭方法”（作为识别途径）、“不是照顾者”（自我/家庭识别）、“邮政编码彩票”（支持服务高度多样化）、“量身定制”的支持，以及“同伴支持的力量”。提出了关于潜在倡议和行动的建议，这些倡议和行动可以帮助提高对 YDC 的认识并增加他们的识别成功率。我们的研究结果支持对 YDC 的识别采取广泛而全面的方法，同时开展可及和相关的支持计划。支持本身将在改善后续识别方面发挥作用，如果不“适合目的”，则会阻碍识别。
