TY - JOUR

T1 - Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

AU - Masterson Algar, Patricia

AU - Egan, Kieren

AU - Flynn, Greg

AU - Hughes, Gwenllian

AU - Spector, Aimee

AU - Stott, Joshua

AU - Windle, Gill

PY - 2023/11/23

Y1 - 2023/11/23

N2 - 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”

AB - 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”

KW - Young person

KW - young carer

KW - adolescents

KW - younger onset dementia

KW - Dementia

KW - carer

KW - admiral nurse

KW - School

U2 - 10.3390/ijerph20237103

DO - 10.3390/ijerph20237103

M3 - Article

VL - 20

JO - International Journal of Environmental Research and Public Health

JF - International Journal of Environmental Research and Public Health

SN - 1660-4601

IS - 23

M1 - 7103

ER -