Carers as equal partners in care planning

This was a pilot study that assessed the process and outcome of an initiative whereby carers of patients with dementia were given a designed package of documentation to hold at home. The research involved 20 carers of patients with dementia having carer-held records at home for a 6-month period. The aims of the research were: to assess carers' satisfaction with the system; to evaluate the actual use made of the documents by both carers and professionals: to assess the suitability of the document design; and to assess carers' roles as partners with professionals in care planning via use of the record. Both quantitative and qualitative data were obtained by use of a questionnaire that used quantitative scales of measurement and allowed carers to express views. The results showed that carers reported benefits of the system and felt more empowered and valued by service providers because of use of the documentation. However, there were design faults in the document itself, which were addressed as a result of the pilot study. A need for preparatory and on-going education of clients and professionals was also identified regarding the best use of the document for all parties. A follow-up three-year longitudial study is planned in which health outcomes of the use of carer-held records will be quantitatively measured. The problems identified in this pilot study will be addressed before the launch of the main study; several potential confounding variables have been recognized and can be controlled.