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.