Involving people who have dementia in the evaluation of services: A review

Abstract

Government policy and good practice dictate that health and other care services should routinely involve service users in the evaluation of the services that they receive. While the carers of people with dementia have been involved in this process relatively often, it has been much rarer for people with dementia themselves to be involved. This article reviews five methods of gathering the experiences of people with dementia as those experiences relate to the services that they receive: questionnaires and structured interviews; semi-structured interviews; observation; advocacy; and focus groups. A number of ethical issues are highlighted including: consent; the capacity to make decisions; confidentiality and empowerment.