Background: Informal carers of people living with dementia can experience increased burden, stress and a decline in mental health and wellbeing. Growing evidence suggests these impacts are greater for those caring for individuals living with behavioural-variant frontotemporal dementia. However, little is known about their psychological needs and how these carers access psychological support. Objective: This study aimed to understand the impact of caring on psychological wellbeing and the experiences and needs of carers in seeking psychological support. Methods: Twelve carers participated in either a group or individual semi-structured interview. Data were analysed qualitatively using thematic analysis. Results: Five themes emerged: (1) The job of being a carer, (2) The carer and person living with bvFTD as a unit: Reciprocal wellbeing & Care for the carers, (3) Feeling seen, Feeling heard, and Being connected, (4) The power of information and (5) Meaning and purpose through caring. These themes captured the challenges, supports and meaningful aspects of the caring experience, and their impact on psychological wellbeing. While carers reported both positive and negative impacts of caregiving on their psychological wellbeing, they also highlighted a lack of tailored services in the context of behavioural-variant frontotemporal dementia. Conclusions: Psychological support services for carers should address common barriers to accessibility and flexibility and be developed in collaboration with carers to optimise feasibility and efficacy.
Keywords: behavioural-variant frontotemporal dementia; carer support; carers; lived experience; mental health; psychological wellbeing.