In England we are becoming increasingly familiar with dementia. What is this disease? What are its common symptoms? How does it progress and why is it becoming a burden for not just patients but for their family caregivers and the healthcare services? All of this means that our society is getting better at recognising the challenges associated with the diagnosis, treatment and care of dementia.
Conversely there are many countries around the world where there is a wide scope for improvement, especially in low- and middle-income countries where the health and social care system is underdeveloped. It is believed that the dementia will affect strongly these countries where the proportion of older population is increasing the fastest, general awareness is low and the required resources to meet this public health challenge are scarce. The informal care burden, especially for women, is also likely to be higher in these countries, and 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 blog highlights the key findings of a recently concluded 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 a low-income country of beliefs, attitudes, and awareness about dementia have 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 attributed the condition to a range of factors, such as doing too much, stress, shock, social isolation and in more extreme cases, black magic. These misconceptions led 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 that the person 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).
Conversely, in the individual interviews with people with dementia many people did not report experiencing stigma from community members and reported support in view of dementia persons’ age and debility. A possible reason for people with dementia not being mistreated by community members may be that these interviewees are still in the milder stage of dementia. They are able to go out-and-about by themselves, do shopping, and often do not exhibit behaviours that are socially unacceptable.
Family caregivers also spoke of feeling 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.
Important policy recommendations stemming from this research include:
- Developing 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 and staff and support groups.
- 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 the research on dementia in Pakistan and from different regions of the world. The study offers a template for similar studies in other low- and middle-income countries.
The study was funded by Age International and Age UK, 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.
About the Author
Professor Asghar Zaidi is a Senior Research Fellow at the Oxford Institute of Population Ageing. Asghar is Professor of Gerontology at Seoul National University, Korea and Visiting Professor at London School of Economics and Political Science, London.
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We welcome your comments on this or any of the Institute's blog posts. Please feel free to email comments to be posted on your behalf to administrator@ageing.ox.ac.uk or use the Disqus facility linked below. Her dissertation focuses on demographic change, intergenerational justice and participation.
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Comments Welcome: We welcome your comments on this or any of the Institute's blog posts. Please feel free to email comments to be posted on your behalf to administrator@ageing.ox.ac.uk or use the Disqus facility linked below.
