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Experiences of people with dementia in Pakistan: help-seeking, understanding, stigma, and religion

Experiences of people with dementia in Pakistan: help-seeking, understanding, stigma, and religion
Experiences of people with dementia in Pakistan: help-seeking, understanding, stigma, and religion

Background and Objectives: The prevalence of dementia will increase in low- and middle-income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear. Research Design and Methods: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analyzed thematically. Results: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Help-seeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations. Discussion and Implications: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers.

Awareness, Cognition, Islam, Qualitative research methods, religion and spirituality
0016-9013
145-154
Willis, Rosalind
dd2e5e10-58bf-44ca-9c04-f355f3af26ba
Zaidi, Asghar
c0e9133f-e3da-47ed-8cd6-2473386bddf4
Balouch, Sara
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Farina, Nicolas
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Willis, Rosalind
dd2e5e10-58bf-44ca-9c04-f355f3af26ba
Zaidi, Asghar
c0e9133f-e3da-47ed-8cd6-2473386bddf4
Balouch, Sara
7b565f7b-30ca-45e7-994f-2b30d245675a
Farina, Nicolas
7b925c2a-1eb6-4882-84f5-99664eab9b6b

Willis, Rosalind, Zaidi, Asghar, Balouch, Sara and Farina, Nicolas (2020) Experiences of people with dementia in Pakistan: help-seeking, understanding, stigma, and religion. The Gerontologist, 60 (1), 145-154. (doi:10.1093/geront/gny143).

Record type: Article

Abstract

Background and Objectives: The prevalence of dementia will increase in low- and middle-income countries like Pakistan. Specialist dementia services are rare in Pakistan. Public awareness of dementia is low, and norms about family care can lead to stigma. Religion plays a role in caregiving, but the interaction between dementia and Islam is less clear. Research Design and Methods: Qualitative interviews were carried out with 20 people with dementia in Karachi and Lahore. Interviews were conducted in Urdu, translated to English, and respondents' views on help-seeking experiences, understanding of diagnosis, stigma, and religion were analyzed thematically. Results: Although some people with dementia understood what dementia is, others did not. This finding shows a more positive perspective on diagnosis in Pakistan than previously thought. Help-seeking was facilitated by social and financial capital, and clinical practice. Stigma was more common within the family than in the community. Dementia symptoms had a serious impact on religious obligations such as daily prayers. Participants were unaware that dementia exempts them from certain religious obligations. Discussion and Implications: Understanding of dementia was incomplete despite all participants having a formal diagnosis. Pathways to help-seeking need to be more widely accessible. Clarification is needed about exemption from religious obligations due to cognitive impairment, and policy makers would benefit from engaging with community and religious leaders on this topic. The study is novel in identifying the interaction between dementia symptoms and Islamic obligatory daily prayers, and how this causes distress among people living with dementia and family caregivers.

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Willis et al Authors Accepted - Dementia in Pakistan - Accepted Manuscript
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More information

Accepted/In Press date: 1 October 2018
e-pub ahead of print date: 17 November 2018
Published date: February 2020
Keywords: Awareness, Cognition, Islam, Qualitative research methods, religion and spirituality

Identifiers

Local EPrints ID: 425297
URI: http://eprints.soton.ac.uk/id/eprint/425297
ISSN: 0016-9013
PURE UUID: 515db835-f2dd-4a79-a5df-9b98219df3ad
ORCID for Rosalind Willis: ORCID iD orcid.org/0000-0001-6687-5799

Catalogue record

Date deposited: 12 Oct 2018 16:30
Last modified: 28 Apr 2022 06:06

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Contributors

Author: Rosalind Willis ORCID iD
Author: Asghar Zaidi
Author: Sara Balouch
Author: Nicolas Farina

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