The experiences and perspectives of older adult mental health professional staff teams when supporting people with young-onset dementia.

Background . The diagnosis of young-onset dementia presents significant challenges both for the person and their families, which often differ from the challenges faced with late-onset dementia. Evidence of the experience of service users and carers tends to reveal a negative appraisal of the care received, citing longer diagnosis times, poor clinician knowledge and lack of age-appropriate care. However, evidence looking into staff experiences of supporting someone with young-onset dementia is relatively scarce. The aim of this study was to explore the experiences and reflections of health and social care staff who support people with young-onset dementia within older adult mental health services, and whether their knowledge of the systems they work in could reveal the existence of barriers or facilitators to young-onset dementia care. Methods . Health and social care professionals working with people and carers with young-onset dementia across England were remotely interviewed between September and December 2021. Data were analysed using inductive thematic analysis. Findings . Sixteen staff members were interviewed. Three themes were constructed with six sub-themes. The first theme related to the perception of greater complexity around young-onset dementia support. The second theme describes staff fears around their ability to effectively support people with young-onset dementia, including the perception that young-onset dementia requires specialist input. The final theme describes systemic and structural inefficiencies which provide additional challenges for staff. Conclusions . Providing effective support for people with young-onset dementia and their families requires adjustments both within the clinician role and mental health services. Staff considered young-onset dementia support to be a specialist intervention and felt the services they work for are suited to generic mental health and dementia provision. Findings are discussed with recommendations relating to developing a standardised model of dementia care for young-onset dementia which recognises and responds to the unique experiences of young-onset dementia.