Young Onset Dementia – Peer Research: exploring the insights of Informal Carers

This qualitative study of informal (unpaid) carers for people living with a diagnosis of Young Onset Dementia (YOD) was conducted by a previous informal carer of a person living with YOD. The objective of this study was to ascertain informal carers' experience of the support that they received.

A review of literature was undertaken to ascertain current knowledge in relation to informal carer experience. The findings allowed the development of an interview schedule that was used to conduct semi-structured interviews with six informal carers, recruited via a memory clinic in a Northern Ireland Health and Social Care Trust. Interviews were conducted in 2022. These were recorded and transcribed allowing an analysis of major themes. Key messages from the interviews included participants feeling that limited knowledge of YOD impacted timely diagnosis and management. Some participants felt that social care services were not sufficiently tailored to the needs of people with YOD and their informal carers. Participants identified financial implications specific to YOD indicating a need for dedicated tailored support in this area.
This study provides social workers and other practitioners with valuable insights into YOD from the perspective of informal carers.