What Does it Mean to Listen to People with Dementia?

Abstract

A total of 19 people with dementia were interviewed as part of a study into unmet respite care need amongst caregivers and day-care attenders in Sheffield. Some important contextual debates associated with conducting social research with people with dementia are considered. These include informed consent, competency, and how the interests of caregivers and people with dementia are bound together. A form of process consent was used in conducting semi-structured interviews with day-care attenders. Day-care attenders spoke about 'being here' in a number of ways. These include their initial experiences, their sources of satisfaction and their sense of being in families. These substantive findings and the associated methodological insights suggest day-care attenders have important things to say as service-users if appropriate strategies for listening are employed. Service-providers can collaborate imaginatively with day-care attenders to actively explore how care might be shaped by the experiences of persons with dementia.