Narrative Ethnography in Analysis Caring Demand of Spousal Caregivers for Older People with Dementia: A Qualitative Study

Background:
With deteriorated cognitive condition and age-related disease, care for older adults becomes a global challenge. This challenge care is further aggravated with decreased fertility and increased longevity in the ageing population. Being an informal carer of a person with dementia can have a negative effect on the caregiver’s health and quality of life. Spouse caregivers (SC) have been found to be especially vulnerable as they need to simultaneously fulfil their supportive roles and manage the burden brought about by the demands of caregiving with the disease progression of their spouse. Nevertheless, relatively little is known about the needs of SC at different stages of the caring.

Method:
With the framework of caregiving by Cameron and Gignac (2008), this paper explores the topic of caregiving with focus on specific needs of SC in caring for the spouse with different stages of the dementia.Narrative ethnography, the qualitative research technique, was selected as a methodology to study stories in the context of SC telling and use stories to interpret the caregiving phenomenon. Participant inclusion criteria were: (a) SC aged between 65 and 80, and (b) being able to understand verbal and written instructions. To eliminate the co-founding care-giving burden, participants with major physical dysfunctions, such as stroke and head injuries, were excluded.

Result:
Forty-five SC were recruited through poster advertisements. With adaptation of the stage of change model of Cameron and Gignac (2008), there were identified 5 major themes of experience from the spousal caregivers, namely a) seeking understanding, b) stabilization, c) preparation, d) implementation, and e)adaptation. Several sub-themes and constructs to address different needs of SC, such as concern on their deteriorating physical health condition cannot further cope with both physical and mental demand in taking of their progressively deteriorated relatives with dementia. Mental well-being of SC changed over the course of changing cognitive function and functional impairment of older adults with dementia.

Conclusion:
Narrative ethnography indicated poor cognitive function and functional dependent were the most difficult mental burden for the SC. These two components are crucial part for the further grounded theory development.