Masterson-Algar, P.; Egan, K.; Flynn, G.; Hughes, G.; Spector, A.; Stott, J.; Windle, G. Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers. Int. J. Environ. Res. Public Health2023, 20, 7103.
Masterson-Algar, P.; Egan, K.; Flynn, G.; Hughes, G.; Spector, A.; Stott, J.; Windle, G. Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers. Int. J. Environ. Res. Public Health 2023, 20, 7103.
Masterson-Algar, P.; Egan, K.; Flynn, G.; Hughes, G.; Spector, A.; Stott, J.; Windle, G. Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers. Int. J. Environ. Res. Public Health2023, 20, 7103.
Masterson-Algar, P.; Egan, K.; Flynn, G.; Hughes, G.; Spector, A.; Stott, J.; Windle, G. Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers. Int. J. Environ. Res. Public Health 2023, 20, 7103.
Abstract
Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low and as a consequence, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDCs 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-hour 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 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
Subject
Social Sciences, Other
Copyright:
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.