What matters most to families of older people in consumer directed care: Literature review

Carers
Thursday 26 July, 1340 – 1400

Presenters

Anne Muldowney
Carers Victoria

Abstract
This paper presents findings of a literature review of experiences of family carers of older people with consumer-directed-care (CDC). CDC is more recent in Australia than overseas. CDC in home care packages presents challenges for families bridging the boundary between informal and formal care, enabling older relatives to access formal care services.

Themes included; CDC programs providing choice and control for carers, family and friends receiving payment for care, risk and safeguarding, the importance of relationship, articulating roles and responsibilities of carers, and the nature and adequacy of individualised funding.

Findings highlight how family preferences for and experiences of CDC are shaped by the nature of their care relationship and models of consumer-direction available. Preferences for CDC are strongly influenced by the prospect of greater amounts of formal care for people with higher support needs. However, most families do not want to take on all the responsibilities of employing and managing care staff.

Evidence is mixed on the extent to which CDC delivers choice and control for carers. Most studies report neutral to positive family outcomes compared to more traditional forms of community care. There are reported benefits to carer wellbeing, increased choice in time use and improvement to care relationships. However, this is accompanied by stress associated with navigating systems, paperwork and employment responsibility.

Recommendations are made for aged care policy and research into what matters most to families of older people.