“It’s Not like It’s Going to Get Better - I Might Need More Assistance”: A Mixed-Methods Study Exploring the Evolving Needs of Care Partners of People with Dementia

Holistic, integrated, and ongoing post-diagnostic care is essential to address the progressive cognitive and functional decline experienced by people living with dementia, as well as the psychosocial and emotional needs of their care partners. Despite growing recognition of its importance, post-diagnostic care remains fragmented and challenging to access in Australia. This study aimed to examine care partners’ experiences and perceptions of the accessibility and adequacy of post-diagnostic support services in the Australian Capital Territory. An explanatory sequential mixed-methods design was implemented. A cross-sectional survey of care partners (n = 86; 75.6% female) assessed service accessibility, availability, and responsiveness. Subsequently, purposive semi-structured interviews (n = 13; 53.8% female) elicited detailed perspectives on system navigation and lived experiences. Qualitative data underwent inductive content analysis and were triangulated with quantitative findings. Nearly 70% (n = 50) of care partners reported difficulties navigating dementia care and support with the person living with dementia. Reported barriers included extended wait times, funding limitations, service inflexibility, and convoluted referral pathways, with service adequacy diminishing as dementia progressed. While early-stage interventions were valued, participants highlighted inconsistent availability and inadequate flexibility of services to adapt to evolving needs. The findings align with the objectives of Australia’s National Dementia Action Plan 2024-34, highlighting the need for affordable, integrated and person-centred care models, strengthened referral and care navigation pathways, supported by ongoing workforce development.