Non-pharmacological intervention experiences and expressed needs of people with young onset dementia: a scoping review

Purpose: Non-pharmacological interventions are increasingly recommended for people with dementia, to delay the progression of their symptoms and maximise their independence. Evaluation is required of how interventions are experienced by people with young onset dementia and if they are meeting their distinct additional needs. This review aimed to examine the empirical evidence on non-pharmacological intervention experiences and expressed needs of this population. Methods: We followed the Joanna Briggs Institute (JBI) methodology and the PRISMA-Extension for Scoping Reviews checklist of reporting items. Five databases were searched for experiences with non-pharmacological physical, functional, cognitive, psychological, or social interventions by people with young onset dementia between 2013–2024. Twenty-three articles were reviewed. Results: Intervention experiences were disparate and delivered across fragmented services. Experiences with specific interventions were not well described although age appropriate, individually tailored services with navigation support were requested. Psychosocial interventions were particularly lacking and did not address the social relationships and activities that had been lost post-diagnosis but remained significant to people with young onset dementia. Conclusions: Further research is needed to examine how psychosocial interventions are experienced and how delivery can be structured to cohesively meet the psychosocial intervention gaps and expressed needs of people with young onset dementia.