Post-diagnostic care pathways in dementia: Experiences and needs of family carers and considerations for interventions.

Abstract

ObjectivesSocial and behavioural symptoms, prevalent across dementia syndromes, contribute to increased carer challenges and stress. However, post-diagnostic support for these symptoms remains limited. The Carers Way Ahead, initially developed for brain injury, is an online carer program addressing behavioural management of apathy, irritability, aggression, disinhibition, social difficulties, and self-care. This study aimed to explore the experiences and needs of family carers and co-design the adaptation of the Carers Way Ahead program for dementia.MethodTen family carers of people with dementia (4 frontotemporal dementia, 3 Alzheimer's disease, 3 Lewy body dementia, 1 Vascular dementia) in Australia participated in focus groups and interviews. Carers completed the Carers Way Ahead modules and provided insights into their experiences and feedback on the program. Transcripts were analysed using reflexive thematic analysis.FindingsThree themes were generated: (1) Adapting to life transitions highlighted challenges and relationship changes in the dementia journey, (2) Navigating dementia care pathways underscored complexities in accessing and navigating institutional and practical support, and (3) Finding solutions that address carers' needs emphasised the importance of considering varying needs across disease stages and pragmatic intervention considerations.ConclusionDisparities in the accessibility, consistency, and quality of post-diagnostic support for carers were revealed. Substantial unmet needs exist in the current post-diagnostic experience for people with dementia and carers in Australia. This study suggests opportunities for improvement and provides valuable insight for the development and adaptation of psychosocial interventions like the Carers Way Ahead program.