Managing public health care policy: who's being forgotten?

ABSTRACT

The purpose of this paper is to explore the lived experience and perceptions of a sample of caregivers who are providing informal care 24h per day, 7 days per week for those with Alzheimer's disease in New Zealand. A mixed-method research design was used to collect and analyse the data. Semi-structured interviews with five caregivers and the completion of a questionnaire survey by 64 full-time caregivers provided insight into the significant burden carried by voluntary caregivers. However, alongside their experience of negative effects on their mental and psychological health, work and financial status, new perspectives of valued self-development and enhanced support networks in their caregiving role emerged. Despite this exploratory project being limited to a small sample of caregivers, the evidence suggests that they employ coping mechanisms which need to be recognised and supported with adequate and equitable resource allocation, if policy managers desire the current level of dependence on informal caregiving for those with Alzheimer's in this country to be sustained.