Abstract
Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.
Highlights
Associated with population aging, dementia is emerging as an increasingly prevalent condition, in low- and middleincome countries (LMIC) where about two-thirds of the world’s population with dementia reside [1]
A key challenge for Patient and Public Involvement” (PPI) coordinators was explaining the concept of PPI, which was new to potential PPI contributors
Other challenges reported included low general and health literacy levels, travel time, and the financial cost to attend the meetings, for those traveling from rural areas
Summary
Associated with population aging, dementia is emerging as an increasingly prevalent condition, in low- and middleincome countries (LMIC) where about two-thirds of the world’s population with dementia reside [1]. Health and social care services for this population, or for older people in general, is limited [3] or, in many areas, non-existent Developing such services, guided by locally obtained evidence, is a priority; in many LMICs, research capability for non-communicable diseases (NCD) in general is still developing [4], and for dementia research, this situation is magnified. SENSE-Cog Asia is an ongoing feasibility study of a psychosocial intervention to improve quality of life in PwD through enhancing hearing function, culturally adapted for South Asian settings. Based on the European SENSE-Cog trial [40, 43] (www.sense-cog.eu), this single arm, open-label, study has four phases: [1] cultural adaptation of intervention; [2] feasibility and acceptability evaluation; [3] capacity and capability building for dementia research; and [4] PPI. We elaborate on Phase 4 of the project, the PPI activity
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