In many countries around the world, we have become familiar with the term ‘dementia’. Dementia is the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person’s daily life and activities. We now know what this disease is, what its common symptoms are, how it progresses and why is it becoming a burden for not just patients but also for their family caregivers and healthcare services. All of this means that on the whole we are getting better at recognising the challenges associated with the diagnosis, treatment and care of dementia.

However, in Pakistan there is a dire need for a better understanding about dementia, especially since our formal health and social care system is underdeveloped. It is believed that dementia will affect us strongly, especially since the number of older persons is increasing fast, our general awareness is poor and the required resources to meet this public health challenge are scarce. The informal care burden, especially for women, is also high because round-the-clock care is essential for those with advanced stages of dementia, many family members find that they are unable to cope without formal help.

This article highlights the key findings of a study that focuses on understanding challenges of dementia in the socio-cultural context of Pakistan. The study interviewed a total of 40 dementia patients and caregivers in Karachi and Lahore. Focus group discussions involved a further 40 participants, equally divided between men and women. Eight people took part in key informant interviews.

Such a study in Pakistan of beliefs, attitudes, and awareness about dementia has important implications as it affects treatment seeking behaviour and pathways to care. This study is novel in identifying the interaction between dementia symptoms and how social and religious norms cause distress among people living with dementia and family caregivers.

One of the most striking findings is the lack of awareness of dementia and its symptoms. Respondents in Pakistan attribute the condition to a range of factors, such as doing too much work, continuous stress, shocks and social isolation and in more extreme cases, black magic. These misconceptions lead to misunderstandings about care and prognosis.

Another barrier is the stigma associated with dementia, similar to other mental health issues. The potentially stigmatising attitudes towards dementia in public arise mainly due to negative and inaccurate beliefs about the causes of dementia. Some felt falsely that persons with dementia or their family were to blame for the condition. It was often viewed that the family held responsibility for providing care and that seeking help outside of the family is interpreted by others as disrespectful (as strong family beliefs and image conscious society in Pakistan demand that we personally take care of our elders).

Family caregivers also spoke of feeling overworked and isolated, with more women than men expressing concerns about how they must neglect other duties such as childcare, household tasks and their jobs. They also spoke of the effects on their own health and feelings of frustration and guilt that they felt helpless to treat dementia and could only observe the progressively worse suffering that it causes.

We can draw some important policy recommendations stemming from this research.

We need to develop a national campaign to raise awareness of dementia, highlighting symptoms and their progression, and how to seek help and diagnosis. A national screening programme to identify dementia cases would be beneficial, as would increasing the specialist dementia services, such as day care centres, dedicated hospital wards, staff and support groups.

A strong communication strategy is required from experts, religious and community leaders to raise awareness about the disease as well as to enhance the acceptability of seeking help from outside home and to learn to exercise exemption from prayers for those with mental disorders.

Furthermore, a greater emphasis on research- and evidence-informed health policy is essential, with knowledge translation from research on dementia in Pakistan and from different regions of the world.

(The study was funded by Age International and Age UK and led by Prof Asghar Zaidi. The research team is made up of partners from University of Southampton (Dr Rosalind Willis), Brighton and Sussex Medical School (Dr Nicolas Farina, Dr Sara Balouch), Aga Khan University Karachi (Dr Qurat Khan), Alzheimer’s Pakistan (Dr Hussain Jafri), and HANDS International (Dr Irfan Ahmed and Ms Rubina Jaffri). Advisors included Dr Yasmin Rashid, Provincial Minister of Punjab for Healthcare and Medical Education, Dr Maryam Rab of British Council Islamabad, Prof Murad Musa of Aga Khan University and Simon Hunt of Oxford Policy Management.)

The writer is the vice chancellor of Government College University, Lahore. He is also an associate professorial fellow at the Oxford Institute of Population Ageing, University of Oxford, the UK. Previously, he has been a professor of social gerontology at Seoul National University, Korea, and a professor at the London School of Economics and Political Science, London