Consumer Directed Care: Understanding and promoting participation and care outcomes for people living with dementia in receipt of a Home Care Package
NHMRC-ARC Dementia Development Fellowship
Duration: 2016 – 2020
Since July 1 2015 all recipients of Home Care Packages (HCPs) in Australia negotiate their supports under a model of Consumer Directed Care (CDC). Some research has suggested CDC can be beneficial to promote choice and higher consumer satisfaction. However, other studies have highlighted challenges with CDC for service providers and older consumers, especially for those living with dementia. Factors influencing the delivery of CDC with people with dementia are complex and include: the characteristics of the person with dementia; service factors; and the presence and capacities of a family or other carer. Given this complexity there is critical need for research answering the key questions:
- To what extent, and by what strategies, can the objectives of CDC be met for people living with dementia within the HCP program?
- To what degree does CDC specifically contribute to outcomes for HCP clients with dementia?
- Can we intervene to promote participation and control in care for HCP clients with dementia for whom these variables are low?
What we did
During 2016 a number of studies were conducted to explore the key research questions. This included a program analysis highlighting the choices people negotiating a HCP are required to make, and what type of information and support is available to assist them. A pilot study was commenced in the community setting to gain the service provider perspective on the challenges and opportunities of providing CDC for people living with dementia. Finally, an international partnership with Dr James Caiel and Dr Ann-Marie Towers (University of Kent) has been established to adapt and trial the use of the ASCOT Self- Complete, Easy Read and the Multimethod (CH3) tools with people with dementia in the community setting. This feasibility study will occur in partnership with a number of community care agencies in the Illawarra region during 2017.