Defining the outcomes of community care: the perspectives of older people with dementia and their carers

There is growing recognition of the need for outcome measures which reflect the aims of sen ices for people with dementia. The development and applica tion of existing outcome measures has often marginalised people with dement ia. 'Experts' and carers have been viewed as primary sources when identifyi ng relevant outcomes or domains of quality of life, and proxy respondents h ave often been responsible for rating outcomes on the resulting measures. T his paper reports a small consultation with people with dementia and their carers to identify the desired outcomes of community care. While there was considerable overlap in the outcomes identified by people with dementia and their carers, a number of limitations of relying solely on carers as proxy respondents were identified. A key outcome, which has been relatively negl ected in previous work, was maximising a sense of autonomy. A range of outc omes related to the ways in which services are delivered were also identifi ed. Future evaluative studies should encompass both quality-of-life outcome s and service-process outcomes (the impacts of the ways in which services a re delivered) in addition to other outcome measures relevant to the aims an d objectives of the service.