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

## TL;DR

Family carers of people with dementia face significant emotional, mental, and physical challenges when supporting them at home during the last year of life.

## Contribution

This study provides new insights into the experiences of bereaved family carers caring for people with dementia at home during the last year of life.

## Key findings

- Caring for a person with dementia at home in the last year of life can jeopardize carers' health, finances, and relationships.
- Family carers often feel overwhelmed by uncertainty and lack understanding of dementia prognosis.
- Training and decision-making support are needed to better assist family carers in end-of-life care.

## Abstract

More people are dying at home with dementia. While there is growing recognition of the central role that family 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.

To explore the experiences of bereaved family carers who had provided care for a person with dementia living at home in the last year of life.

A descriptive qualitative study based on a constructivist epistemology using in-depth semi-structured interviews. Data were analysed using reflexive thematic analysis.

Twenty-nine bereaved family carers who had supported a person with dementia living at home in the last year of life.

Caring for a person with dementia at home in the last year of life can be emotionally, mentally, and physically overwhelming. Family carers described the challenges 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.

Supporting a person with dementia at home in the last year of life can jeopardise family 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. Family carers would benefit from training on 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.