Mogan, C, Harrison Dening, K, Dowrick, C and Lloyd-Williams, M (2022) Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences. Palliative Medicine, 36 (6). pp. 976-985. ISSN 0269-2163

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Abstract

Background: More people are dying at home with dementia and Alzheimer’s disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. Aim: To explore informal caregivers’ views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/Participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life.
Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained.

Item Type:	Article
Uncontrolled Keywords:	Caregivers; Death; Dementia; Home Care Services; Humans; Qualitative Research; Social Support; Humans; Dementia; Death; Qualitative Research; Social Support; Caregivers; Home Care Services; Dementia; end of life; informal care; palliative care; qualitative study; relatives; Caregivers; Death; Dementia; Home Care Services; Humans; Qualitative Research; Social Support; Dementia; Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD); Neurodegenerative; Health Services; Clinical Research; Caregiving Research; Brain Disorders; Acquired Cognitive Impairment; Behavioral and Social Science; Alzheimer's Disease; Neurosciences; Aging; 7.2 End of life care; 7.1 Individual care needs; 8.1 Organisation and delivery of services; Neurological; 3 Good Health and Well Being; Caregivers; Death; Dementia; Home Care Services; Humans; Qualitative Research; Social Support; 1117 Public Health and Health Services; 1199 Other Medical and Health Sciences; Gerontology
Subjects:	R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine R Medicine > RT Nursing
Divisions:	Nursing and Advanced Practice
Publisher:	SAGE Publications
SWORD Depositor:	A Symplectic
Date Deposited:	05 Dec 2024 16:57
Last Modified:	05 Dec 2024 17:00
DOI or ID number:	10.1177/02692163221092624
URI:	https://researchonline.ljmu.ac.uk/id/eprint/25050

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