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

Background and Objectives: Family care partners of people with dementia are not typically the focus of health care 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 navigate health care 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 semistructured 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 3 key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified 3 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 health care and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training of practitioners can highlight the needs of carers for knowledge, support, and connection, and the importance of prioritizing them differentially according to the stages of the carer journey.