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

Willis, Ros, 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). pp. 145-154. ISSN 1758-5341

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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.

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.

Item Type: Article
Schools and Departments: Brighton and Sussex Medical School > Neuroscience
Subjects: H Social Sciences
R Medicine > RC Internal medicine > RC0321 Neurosciences. Biological psychiatry. Neuropsychiatry > RC0438 Psychiatry, including Psychopathology > RC0513 Psychoses > RC0521 Dementia
Depositing User: Nicolas Farina
Date Deposited: 12 Oct 2018 09:50
Last Modified: 01 Mar 2021 13:45
URI: http://sro.sussex.ac.uk/id/eprint/79170

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Project NameSussex Project NumberFunderFunder Ref
Understanding, Beliefs and Treatment of Dementia in PakistanG2259Age UKUnset