"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

Mogan, C, Dening, KH, Dowrick, C, McCarrick, K and Lloyd-Williams, M (2025) "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. BMC geriatrics. ISSN 1471-2318

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Abstract

Background
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.

Aim
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.

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

Participants
Twenty-nine bereaved family carers 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. 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.

Conclusions
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.

Item Type:	Article
Uncontrolled Keywords:	Dementia; End-of life; Family carers; Home death; Informal care; Palliative care; Qualitative study; 4203 Health Services and Systems; 4205 Nursing; 42 Health Sciences; Aging; Dementia; Brain Disorders; Behavioral and Social Science; Acquired Cognitive Impairment; Neurodegenerative; Neurosciences; 7.1 Individual care needs; 8.1 Organisation and delivery of services; Neurological; 3 Good Health and Well Being; 1103 Clinical Sciences; 1106 Human Movement and Sports Sciences; Geriatrics; 3202 Clinical sciences; 4203 Health services and systems; 4206 Public health
Subjects:	B Philosophy. Psychology. Religion > BF Psychology R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry R Medicine > RT Nursing
Divisions:	Nursing and Advanced Practice
Publisher:	Springer
Date of acceptance:	30 October 2025
Date of first compliant Open Access:	22 December 2025
Date Deposited:	22 Dec 2025 14:12
Last Modified:	22 Dec 2025 14:12
DOI or ID number:	10.1186/s12877-025-06719-6
URI:	https://researchonline.ljmu.ac.uk/id/eprint/27759

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