Carer held records : empowerment of carers of patients with dementia living in the community

Recognition that family carers have valid personal knowledge of their relatives with dementia is very important when tailoring care packages to individual needs (Kitwood & Bredin 1992). Carers' well being is also essential for the continued management of patients in the community. A carer held record was designed to be kept at home by carers, in which carers might contribute to care plans for their relatives with dementia, alongside all involved professional disciplines and agencies, and be recognised as equal partners with professionals in providing the best possible care. A pilot study was conducted in 1996 the results of which informed the follow up definitive research (Simpson 1996) Aim To establish whether there are measurable benefits for carers who hold these multidisciplinary records in the areas of health, stress, knowledge of the illness and control. Methodology This is a longitudinal study with a subject group of carers who hold a carer held record, and a comparison group who do not. Questionnaires were completed by both groups at four time intervals over an eighteen month period. Outcome measures concern carers' stress and strain levels, physical and mental health, perceived burden, locus of control, and dementia knowledge, as well as their relatives' cognitive decline. Results Repeated measures ANOVAS for all outcome elements were used in data analysis. Qualitative analysis of use of the carer held record is included in the results. No significant differences were found on the Burden Scale or the aspects of carer stress selected for this study from the Carer Stress Scale (Pearlin et al, 1990). No significant health gains were found. However, subjects have been shown to have significantly lower scores on the Carer Strain Index (Robinson 1983) than controls, and significant changes were highlighted for subjects in aspects of locus of control.