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 services for people with dementia. The development and application of existing outcome measures has often marginalised people with dementia. ‘Experts’ and carers have been viewed as primary sources when identifying relevant outcomes or domains of quality of life, and proxy respondents have often been responsible for rating outcomes on the resulting measures. This 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 neglected in previous work, was maximising a sense of autonomy. A range of outcomes related to the ways in which services are delivered were also identified. Future evaluative studies should encompass both quality-of-life outcomes and service-process outcomes (the impacts of the ways in which services are delivered) in addition to other outcome measures relevant to the aims and objectives of the service.