Excluded voices in dementia care

Abstract

<p>The principles of person centred care have been widely espoused in dementia care. However, the language and conceptualization of person centred care is primarily articulated 'top down': from the vantage point of health and social care professionals, academics and policy makers. The perspectives of family caregivers have not been well explored - a striking omission since it is they who are most likely to have closest knowledge of the 'persons' with dementia. The purpose of this study was to learn from family caregivers of people with dementia the meaning of "person-centred care" and thus, to generate a 'bottom up' view of its conceptualization that can contribute to informing and improving service delivery in dementia care.</p> <p>A small qualitative study of family caregivers was conducted in Ontario using personal interviews to explore their accounts of the degree to which the care their relatives received was knowing or unknowing, i.e. knowledgeable about the 'persons' supposedly at the centre of person-centred care. Analysis of their accounts revealed some key themes: caregivers' attention to establishing their positions as 'knowers', their efforts to enable knowing care of their relatives, and their responses when they witnessed unknowing care. The study also illuminated the consequences of unknowing care for individuals with dementia and their family caregivers. Findings revealed that family caregivers perceived person-centred care as closely linked to a dynamic process in relationship building between service providers, family caregivers and persons with dementia. Barriers to the implementation of person centred care were discussed and implications for social work practice and advocacy considered.</p>