“I tell you what it’s the hardest job”: The experiences of informal carers providing support for people with dementia at home in the last year of life

Abstract Background: More people are dying at home with dementia and Alzheimer’s disease. While there is growing recognition of the central role that unpaid, informal carers play when supporting people with dementia to die at home, knowledge gaps remain around how to best support them as they care for the person during the last year of life. Aim: To explore the experiences of bereaved informal carers who had provided care for a person with dementia living at home in the last year of life. Design: A qualitative interview study. Data were analysed using thematic analysis. Participants: 29 bereaved informal caregivers who had supported a person with dementia living at home in the last year of life. Results: Caring for a person with dementia at home in the last year of life can be emotionally, mentally, and physically overwhelming. Carers described the challenges that they faced when trying to ensure that they met the needs of the person with dementia so that they could remain at home. Three overarching themes were developed from the data: Managing end-of-life symptoms and associated conditions; Living with uncertainty; and Impacts on wellbeing Conclusions: Supporting a person with dementia at home in the last year of life can jeopardise informal carers own health, finances, relationships, and overall wellbeing. Many felt that they had limited understanding about the prognosis of dementia and how this would impact on caring at home, leaving them feeling unsupported amidst the incredible responsibilities placed on them. Informal carers would benefit from learning how to provide practical aspects care for the person with dementia in the home, as well as support when making decisions for the person with dementia towards the end-of-life.