Dementia affects old and frail and those who are socially, economically and educationally disadvantaged. It is believed that the dementia epidemic will be concentrated in low- and middle-income countries (LMICs) where awareness is low and resources to meet this public health challenge are scarce. Another barrier is the stigma associated with dementia, similar to other mental health issues), due to underlying negative and inaccurate beliefs about it, particularly that it is a part of normal ageing process, or it happens due to individual’s own fault or due to family neglect.
Pakistan is a typical LMIC country in this respect where there is very limited awareness among the public about dementia and there is almost non-existent healthcare service specialised in dementia treatment.
This paper will report on the early findings of a project in Pakistan whose aim is to understand people’s cultural beliefs and attitudes about dementia, to advocate for the most effective policies and programmes in raising awareness and providing support services to people with dementia and their caregivers.
A series of Focus Group Discussions (FGDs) has been held with members of the public in Pakistan, 4 single-events in Lahore and Karachi, split by gender. Use is made of culturally adapted vignettes describing a person with dementia at different stages of the disease. Individual interviews with people with mild dementia asked open-ended questions about patients’ own experience with their illness and how other people responded to it.
Family caregivers also took part in an individual semi-structured interview, where they are asked open-ended questions about their family member’s illness, and how they and other family members have responded to it. The Key Informant Interviews provided the views of the key stakeholders, for example practitioners and policymakers who are aware of the public policy programmes and services to address the dementia issue in Pakistan.
The early findings from the individual interview show that the cultural beliefs and lack of family resources as well as a misperception of dementia as an avoidable disease of the old age restricts early diagnosis and treatment of dementia. The care burden is typically on the families, with very little formal support available, restricting the quality of life of carers, especially women. The FGDs confirm that there is a strong stigma and shame associated with dementia and the primary healthcare services have serious deficiencies, especially for low income families. Public health centres and nursing homes are non-existent and there is no national/ regional dementia strategy as such in addressing these issues.