Admiral nursing and the family care of a parent with dementia: using autobiographical narrative as grounding for negotiated clinical practice and decision-making.

BACKGROUND

Providing family care at home for a person with a long-established diagnosis of dementia has been recognized for some time as a multifaceted and complex phenomenon where care roles alter during the course of the condition. Presently, the nursing response to meeting such need is currently poorly defined and documented in the literature and depends more upon descriptive illustrations of practice efficacy rather than any evaluated system of knowledge and skills transfer or framework utilization.

AIM: The aim of the study was to capture an autobiographical account of a family carer's (Kath, co-author) journey through the experience of her mother's dementia and the reflexive dialogue and shared care planning that ensued with the Admiral Nurse (Susan, co-author).

DESIGN

Kath's narrative was captured using practitioner-research principles and 10 interview contacts; the autobiography was then used as the basis for therapeutic and clinical work, as reported and jointly negotiated between Kath and Susan.

RESULTS

The findings demonstrate the importance of constructing care from an autobiographical perspective and integrating lay knowledge within an overall professional response to family/carer need in dementia caregiving situations. The negotiated clinical response to Kath's grief process (the death of Kath's father, the main carer support to her mother with dementia) and Kath's subsequent adaptation process is illustrated through a shared sessional plan and agreed measures of effective care.

CONCLUSION

Integrating narrative approaches into care practice demonstrates important new ways of working alongside families of people with dementia to help develop negotiated, transparent and shared systems of care.