From detection to preparing for the end‐of‐life: A qualitative exploration of the South Asian family carers' experiences of the journey with dementia

Hossain, Muhammad and Tarafdar, Suhail A. and Kingstone, Tom and Campbell, Paul and Chew‐Graham, Carolyn A. (2022) From detection to preparing for the end‐of‐life: A qualitative exploration of the South Asian family carers' experiences of the journey with dementia. Health & Social Care in the Community. ISSN 1365-2524

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People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end-of-life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi-structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end-of-life preparation. Sixteen caregivers participated in face-to-face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end-of-life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end-of-life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day-to-day care. Importantly the findings suggest that planning and preparing to provide end-of-life for people with dementia should recognise and respect family and cultural contexts and religious beliefs.

Item Type: Article
Additional Information: ** Article version: VoR ** From Crossref journal articles via Jisc Publications Router ** History: epub 30-07-2022; issued 30-07-2022. ** Licence for VoR version of this article starting on 30-07-2022:
Uncontrolled Keywords: Public Health, Environmental and Occupational Health, Health Policy, Sociology and Political Science, Social Sciences (miscellaneous)
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Divisions: Institutes and Academies > Institute of Management and Health
SWORD Depositor: JISC Publications Router
Depositing User: JISC Publications Router
Date Deposited: 12 Aug 2022 10:05
Last Modified: 08 Nov 2022 13:41

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