Caring for people with dementia: Mapping the experience and journey from diagnosis

Abstract Background and Objectives Family care partners of people with dementia are not typically the focus of healthcare and aged care providers. They experience unmet needs, missed opportunities for support, and barriers to wellbeing that impact the dyad. This longitudinal study aimed to understand the experience of care partners, mapping their journey as they navigated healthcare and aged care systems as well as other supports. Research Design and Methods Fifteen family care partners participated in this longitudinal, qualitative study. For 6 months they recorded details (provider, date, purpose, outcome, and satisfaction rating) of interactions with health and aged care services. Monthly semi-structured interviews reviewed experiences, prompted by logbooks. Thematic analysis identified factors that influenced care partners’ experiences and mapped the typical journey. Results Data indicated that participants’ needs fluctuated with three key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified three corresponding themes of carer need and risk: ‘psychological support/ distress’, ‘social connection/social isolation’, and ‘knowledge/disempowerment'. Discussion and Implications Findings suggest a critical role of time in dementia care journeys, impacting the support that care partners need from healthcare and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training can highlight needs for knowledge, support, and connection, and the importance of prioritising them differentially according to the stages of the carer journey.