Understanding carer’s experiences as health services users

With strain on the formal aged care system, together with individual preferences to remain living at home as long as possible, there has never been a more important time to invest in developing tools, strategies, and systems that support carers of people living with dementia (PLWD).

However, the question “What do family carers need and want most from the government, health care systems, service providers, the community?” can remain unknown.

A/Prof Celia Harris and team conducted research as a collaboration between health professionals, Carers NSW, and researchers with expertise in psychology, with an objective to bring translational perspectives on the carer experience. The longitudinal study aims to understand the journey of carers of PLWD as they navigate the health system and support options over time. A total of 15 family carers participated in the study, representing a range of backgrounds and stages in the dementia journey.

“In our analysis, we examine factors and values that influence carers’ experiences of contact with service providers and map their preferences against what is being offered, to understand potential gaps in service provision,’ explains A/Professor Harris

“We found several themes in our data such as the impact of individual differences (cultural background, financial situation, and social support) impacting carers’ experiences when navigating the aged care system. Carers also provided feedback on what they found helpful and unhelpful on their dementia journey. The solutions provided by carers included a centralised ‘onestop shop’ for accessing dementia services and a dedicated case worker to assist carers to navigate the complexities of the journey at the key time points when they are needed.”