Exploring perceptions of dementia in Pakistan

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Here in the UK we are becoming more familiar with dementia. There are television adverts alerting us that dementia can happen to anyone, increasing numbers of shops are sticking Dementia Friendly labels in their windows, and the Alzheimer’s Society recently announced that they have reached 2 million Dementia Friends.

All of this means that as a society, we are (hopefully) getting better at recognising the signs and symptoms of dementia, and being more understanding when we meet somebody who has dementia. The Dementia Friends initiative originally started in Japan and has made great progress around the world, including in low-and-middle-income countries (see, for example, Dementia Friends Nigeria). However, there are still many countries where there is wide scope for improvement. Our current research project focuses on one of these countries: Pakistan.

In Pakistan there is limited awareness among the general public about dementia and it is often believed to occur as a part of the normal ageing process, secondary to traumatic events or stressors, or physical weakness. Family also downplay cognitive difficulties to a great extent, often reporting that the patient has always had such symptoms and/or their memory is excellent as they remember details of past events. There is also a strong stigma associated with this disease, or generally with any other mental health problems, as other people attribute the disease happening due to lack of care for one’s elders.

Due to the joint family system, decline in instrumental activities is often explained to be because of the limited need of older people to participate in such activities because the grown up sons and daughters tend to take over. This role switch often happens in families when sons grow up or get married and they or their wives are expected to take over the responsibilities. And, people take pride in enabling older members of the family, especially parents, to give up instrumental activities and hand over the responsibilities to the next generation.

These specific aspects of unawareness about dementia and its impact, together with unhelpful responses from others, can be seen as some of the major reasons for disability and dependency among older people in Pakistan.

According to the World Bank, Pakistan is a low-and-middle-income country (LMIC) and is currently the sixth most populous in the world and is expected to become the third most populous country by 2050. In 2015, 12.5 million Pakistanis were over 60 years of age and this figure will rise to approximately 40 million by 2050. Pakistan has an extremely poor track record when it comes to addressing issues associated with social and economic rights of older persons. It ranks very low in the Global Age Watch Index: at 92 out of 94 countries. It ranks particularly low with respect to health of older persons, with a relatively low life expectancy and even lower healthy life expectancy within the region. The 10/66 Dementia Research Group was formed from the platform of Alzheimer’s Disease International and it has done significant research work in many LMICs including India; however there is dearth of dementia related research and subsequently limited resources to deal with it in Pakistan.

We have been funded by Age International, Age UK, Alzheimer’s Disease International, and HelpAge International to conduct this research. The research team is made up of partners from the University of Southampton, Brighton and Sussex Medical School, Aga Khan University, Alzheimer’s Pakistan, and HANDS International.

Our project aims to explore the experiences of people with mild dementia and their family members in Pakistan, along with the understandings of the general population about dementia, and key informant interviews with policy makers about the current state of dementia care in Pakistan. Qualitative data will be collected in Pakistan, and analysed collaboratively by project partners in Pakistan and the UK. The overall goal is to inform policies and programmes to raise awareness of dementia and provide better support services for people with dementia and their families in Pakistan.

The work of this project will also provide insights for experiences of persons living with dementia and their family caregivers for other low-and-middle-income countries, especially those with a dominant Islamic culture. It is also hoped that this project will lead to a bigger project in Pakistan exploring prevalence of dementia in Pakistan, aligned with the WHO’s Global Action Plan on the Public Health Response to Dementia (2017-2025), adopted by the 70th World Health Assembly on 29 May 2017.

We will report our findings online and at launch events in Pakistan and the UK. Please visit our project website for more details as they are made available.

 

Blog written by Dr Rosalind Willis and Prof Asghar Zaidi, University of Southampton.