A roadmap to develop dementia research capacity and capability in Pakistan: A model for low- and middle-income countries

Iracema Leroi; Nasim Chaudhry; Anna Daniel; Ross Dunne; Saima Eman; Nicolas Farina; Sana-E-Zehra Haidry; Nusrat Husain; Hussain Jafri; Salman Karim; Tayyeba Kiran; Murad Khan; Quratulain Khan; Shakil Jehangir Malik; Rakhshi Memon; Mowadat Hussain Rana; Ambily Sathish; Saima Sheikh; Asad Tamizudin; Sehrish Tofique; Zainab Zadeh; Pakistan Dementia Research Stakeholder Group (PDRSG)

doi:10.1016/j.trci.2019.11.005

A roadmap to develop dementia research capacity and capability in Pakistan: A model for low- and middle-income countries

Alzheimers Dement (N Y). 2019 Dec 28:5:939-952. doi: 10.1016/j.trci.2019.11.005. eCollection 2019.

Authors

Iracema Leroi¹, Nasim Chaudhry², Anna Daniel³, Ross Dunne⁴, Saima Eman⁵, Nicolas Farina⁶, Sana-E-Zehra Haidry¹, Nusrat Husain⁷, Hussain Jafri⁸, Salman Karim⁹, Tayyeba Kiran², Murad Khan¹⁰, Quratulain Khan¹¹, Shakil Jehangir Malik¹², Rakhshi Memon¹³, Mowadat Hussain Rana¹⁴, Ambily Sathish¹⁵, Saima Sheikh¹⁶, Asad Tamizudin¹⁷, Sehrish Tofique², Zainab Zadeh¹⁸; Pakistan Dementia Research Stakeholder Group (PDRSG)

Collaborators

Pakistan Dementia Research Stakeholder Group (PDRSG):
Yasser Abbasi, Sadaf Eitesam, Mohammed Jafri, Aysha Khaliq, Raheel Karim, Saima Nafis, Mohammad Wasay

Affiliations

¹ Global Brain Health Institute, Trinity College Dublin, Ireland.
² Pakistan Institute of Living and Learning, Pakistan.
³ Darul Sakoun, Karachi, Pakistan.
⁴ Greater Manchester Mental Health Trust, UK.
⁵ University of Sheffield, UK.
⁶ Brighton and Sussex medical School, UK.
⁷ Division of Psychology & Mental Health, University of Manchester, UK.
⁸ Fatimah Jinnah Medical University, Lahore, Pakistan.
⁹ Lancashire Care Foundation NHS Trust, UK.
¹⁰ Department of Psychaitry, Agha Khan Unversity, Karachi, Pakistan.
¹¹ Institute of Behavioral Sciences, Dr A. Q. Khan Centre, Dow Univeristy of Health Sciences.
¹² University of Sussex, UK.
¹³ Manchester Global Foundation, UK.
¹⁴ Department of Behavioural Sciences,University of Health Sciences, Lahore, Pakistan.
¹⁵ Manchester Metropolitan University, UK.
¹⁶ Division of Neuroscience and Experimental Psychology, University of Manchester, UK.
¹⁷ Institute of Psychiatry,WHO Collaborating Centre, Rawalpindi Medical University.
¹⁸ Institute of Professional Psychology, Bahria University Karachi, Pakistan.

Abstract

Objective: To produce a strategic roadmap for supporting the development of dementia research in Pakistan.

Background: While global research strategies for dementia research already exist, none is tailored to the specific needs and challenges of low- and middle-income countries (LMIC) like Pakistan.

Methods: We undertook an iterative consensus process with lay and professional experts to develop a Theory of Change-based strategy for dementia research in Pakistan. This included Expert Reference Groups (ERGs), strategic planning techniques, a "research question" priority survey, and consultations with Key Opinion Leaders.

Results: We agreed on ten principles to guide dementia research in Pakistan, emphasizing pragmatic, resource sparing, real-world approaches to support people with dementia, both locally and internationally. Goals included capacity/capability building. Priority research topics included raising awareness and understanding of dementia, and improving quality of life.

Conclusion: This roadmap may be a model for other LMIC health ecosystems with emerging dementia research cultures.

Keywords: Alzheimer disease; Capacity and capability building; Dementia; Lower and middle-income country (LMIC); Mental health; Older adult; Pakistan; Research question prioritization; Research roadmap; South Asia.

Publication types

Review