Understanding the needs and experiences of people with young onset dementia : a qualitative study

Aim Despite an estimated 40,000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia (LOD). The aim of this study was to explore the experiences and needs of people living with YOD (under 65 years) and gain an understanding of the issues that impact on them. Setting Participants’ homes, support group premises or university rooms. Participants 14 people with a diagnosis of YOD from a Northern UK city. Design Semi-structured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis. Results Four superordinate themes are reported on: ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘Living well with young onset dementia’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, being diagnosed with YOD, and subsequently living with the condition. Key issues emerging included: a lack of general awareness of YOD; how this can delay help seeking; commonalities in pre-diagnosis trajectories; retrospective understanding of pre-diagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support; difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks. Conclusions People who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psycho-social concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services which take into account the idiosyncratic needs of people with YOD should be addressed