Providing informal care to a person living with dementia: the experiences of informal carers in Australia

Abstract

Most people with dementia live at home and rely on family and friends who provide unpaid care and support. Informal carers of people with dementia are often described as ‘invisible second patients’, reflecting the higher-than-normal rates of depression, stress and physical illness. To inform service delivery and the development of evidence-based interventions targeting informal carers of people with dementia, it is important to understand their experiences. The aim of this study was to examine the experiences of caregivers in providing informal care to a person living with dementia and to examine how providing this care impacts their own quality of life. Semi-structured interviews were conducted with 16 informal carers in Australia. Recordings of the interviews were transcribed verbatim and analysed using an inductive approach (thematic analysis) which revealed strong narratives from informal carers regarding (1) available support, (2) the health impacts of caring, (3) new roles and responsibilities, and (4) the motivations around caring. The findings of this study reinforce that a comprehensive approach is needed in supporting informal carers in their caring role, ensuring sustainability of the aged care system and quality of life for people living with dementia.