Sustaining Place : how informal carers of persons with dementia address the problem of 'living on the fringes'

Abstract

Informal carers continue to provide the vast majority of care to persons with dementia and given the demographic projections, this is likely to increase in the future. Health and social care professionals’ have a responsibility to work with informal carers to ensure that they are supported in their role and that their needs and concerns are satisfactorily addressed. This is particularly warranted when it is considered that multiple aspects of an informal carer’s life can be affected due to the progressive nature of dementia. While there is already a considerable volume of research on informal dementia care, much of this has focused on: the content, impacts and consequences of the role, ways of coping and the nature of informal care across the trajectory of dementia. However, to date the social experiences and processes involved in this role have not been comprehensively accounted for. It is imperative that this gap in understanding is closed, if the actual concerns and support needs of informal carers of persons with dementia are to be addressed. Therefore, the aim of this study was to develop a theory to explain the processes employed by informal carers of persons with dementia to resolve issues of primary concern to them.