Experiences of ambiguity and ambivalence in the lives of dementia caregivers: Implications for policy and practice

It is a growing challenge for Aged Care services to meet the needs of people affected by dementia in the community. It is also increasingly evident that support for carers needs to underpin this effort. We argue that carer support in the critical fields of dementia care and management can be transformed by translating particular insights from sociological theory into regular practices of service delivery.

Family systems theory proposes that ambivalence and ambiguity in relation to identity, personhood and loss is pervasive among people living with the effects of dementia, whether directly, as people diagnosed with the disease, or indirectly, as carers. This paper explores the impact of these factors on the use of community services via qualitative data obtained from twenty primary carers of people with dementia over a three-month study period in late 2007. Participants produced direct written feedback on their experiences of community help and services in the form of a weekly diary. Regular telephone calls from a research assistant provided support when needed and generated records of progress. Four interviews were conducted with each carer at monthly interviews. Data from these interviews constitute the primary focus of the study.

The interview data reveal complex and interacting sociological factors underpinning caregivers’ use of community services. Boundary ambiguity and ambiguous loss permeated participants’ understandings of their care giving experiences and impacted on their perceived service needs. The implications of these findings for policy development and service provision in the areas of dementia care and management are explored in this paper.