{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T22:36:15Z","timestamp":1793140575183,"version":"4.5.0"},"reference-count":76,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2021,3,23]],"date-time":"2021-03-23T00:00:00Z","timestamp":1616457600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Neurol."],"abstract":"<jats:p><jats:bold>Background:<\/jats:bold> 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 \u201clived experience\u201d 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.<\/jats:p><jats:p><jats:bold>Objective:<\/jats:bold> 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.<\/jats:p><jats:p><jats:bold>Methods:<\/jats:bold> 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 \u201crings\u201d of the Wellcome Trust's \u201cPublic Engagement Onion\u201d 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.<\/jats:p><jats:p><jats:bold>Results:<\/jats:bold> 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.<\/jats:p><jats:p><jats:bold>Conclusions:<\/jats:bold> 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.<\/jats:p>","DOI":"10.3389\/fneur.2021.637000","type":"journal-article","created":{"date-parts":[[2021,3,23]],"date-time":"2021-03-23T05:04:20Z","timestamp":1616475860000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":16,"title":["Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia"],"prefix":"10.3389","volume":"12","author":[{"given":"Jahanara","family":"Miah","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saima","family":"Sheikh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel C.","family":"Francis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gayathri","family":"Nagarajan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sojan","family":"Antony","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maryam","family":"Tahir","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rabia","family":"Sattar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anum","family":"Naz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sehrish","family":"Tofique","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mostazir","family":"Billah","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sajib","family":"Saha","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iracema","family":"Leroi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2021,3,23]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","first-page":"63","DOI":"10.1016\/j.jalz.2012.11.007","article-title":"The global prevalence of dementia: a systematic review and metaanalysis","volume":"9","author":"Prince","year":"2013","journal-title":"Alzheimer's Dement."},{"key":"B2","unstructured":"Dementia Statistics Hub"},{"key":"B3","doi-asserted-by":"publisher","first-page":"423","DOI":"10.1007\/s12126-010-9082-z","article-title":"Ageing in Pakistan-a new challenge","volume":"36","author":"Sabzwari","year":"2011","journal-title":"Ageing Int"},{"key":"B4","doi-asserted-by":"publisher","first-page":"1371","DOI":"10.1016\/j.jacc.2015.02.023","article-title":"Global cardiovascular research training for implementation science, health systems research, and health policy research","volume":"65","author":"Huffman","year":"2015","journal-title":"J Am Coll Cardiol"},{"key":"B5","article-title":"Capacity and capability building for applied dementia research in low- and middle-income countries: two exemplars from South Asia","author":"Leroi","year":"2021","journal-title":"Indian J of Med Res."},{"key":"B6","doi-asserted-by":"publisher","first-page":"939","DOI":"10.1016\/j.trci.2019.11.005","article-title":"A roadmap to develop dementia research capacity and capability in Pakistan: a model for low- and middle-income countries","volume":"5","author":"Leroi","year":"2019","journal-title":"Alzheimer's Dement."},{"key":"B7","unstructured":"LondonDepartment of HealthThe Local Government and Public Involvement in Health Act2007"},{"key":"B8","unstructured":"OttawaCanadian Institutes of Health ResearchGuidelines for Health Research Involving Aboriginal People2007"},{"key":"B9","doi-asserted-by":"publisher","first-page":"637","DOI":"10.1111\/j.1369-7625.2012.00795.x","article-title":"Mapping the impact of patient and public involvement on health and social care research: a systematic review","volume":"17","author":"Brett","year":"2014","journal-title":"Health Expect."},{"key":"B10","unstructured":"Briefing Notes for Researchers2012"},{"key":"B11","unstructured":"National Standards for Public InvolvementStandards Development Partnership"},{"key":"B12","doi-asserted-by":"publisher","first-page":"e026514","DOI":"10.1136\/bmjopen-2018-026514","article-title":"Patient and public involvement in health research in low and middle-income countries: a systematic review","volume":"9","author":"Cook","year":"2019","journal-title":"BMJ Open"},{"key":"B13","unstructured":"LuckA\n          International Public Engagement2016"},{"key":"B14","unstructured":"National Institute for Health Research (NIHR)-Wide Learning and Development for Public Involvement: Working Group Report and Recommendations2015"},{"key":"B15","doi-asserted-by":"publisher","first-page":"44","DOI":"10.1186\/s40900-018-0128-9","article-title":"A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and\/or vision impairment in a multi-site European research study","volume":"4","author":"Miah","year":"2018","journal-title":"Res Involv Engagem."},{"key":"B16","doi-asserted-by":"publisher","first-page":"220","DOI":"10.1186\/s12877-019-1217-9","article-title":"Patient and public involvement in dementia research in the European Union: a scoping review","volume":"19","author":"Miah","year":"2019","journal-title":"BMC Geriatr."},{"key":"B17","doi-asserted-by":"publisher","first-page":"e039321","DOI":"10.1136\/bmjopen-2020-039321","article-title":"The impact of involving people with dementia and their care partners in research: a qualitative study","volume":"10","author":"Miah","year":"2020","journal-title":"BMJ Open."},{"key":"B18","doi-asserted-by":"publisher","first-page":"k3193","DOI":"10.1136\/bmj.k3193","article-title":"Patients' roles and rights in research","volume":"362","author":"Wicks","year":"2018","journal-title":"BMJ."},{"key":"B19","doi-asserted-by":"publisher","first-page":"63","DOI":"10.1177\/1440783309351771","article-title":"Critical perspectives on \u201cconsumer involvement\u201d in health research: epistemological dissonance and the know-do gap","volume":"46","author":"Ward","year":"2010","journal-title":"J Sociol."},{"key":"B20","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3389\/fsoc.2017.00007","article-title":"Beware zombies and unicorns: towards critical patient and public involvement in health research in a neoliberal context","volume":"2","author":"Madden","year":"2017","journal-title":"Front Sociol."},{"key":"B21","doi-asserted-by":"publisher","first-page":"45","DOI":"10.1177\/1355819614551848","article-title":"Public involvement in research: making sense of the diversity","volume":"20","author":"Oliver","year":"2015","journal-title":"J Health Serv Res Policy."},{"key":"B22","doi-asserted-by":"publisher","first-page":"785","DOI":"10.1111\/hex.12888","article-title":"Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot","volume":"22","author":"Greenhalgh","year":"2019","journal-title":"Health Expectations."},{"key":"B23","doi-asserted-by":"publisher","first-page":"k4645","DOI":"10.1136\/bmj.k4645","article-title":"I. Research waste is still a scandal\u2014an essay","volume":"363","author":"Paul","year":"2018","journal-title":"BMJ"},{"key":"B24","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1186\/s40900-018-0087-1","article-title":"Patient and public involvement in reducing health and care research waste","volume":"4","author":"Minogue","year":"2018","journal-title":"Res Involv Engagem."},{"key":"B25","doi-asserted-by":"publisher","first-page":"215","DOI":"10.1097\/JAC.0b013e3181e62bd7","article-title":"Involving citizens and patients in health research","volume":"33","author":"Venuta","year":"2010","journal-title":"J Ambul Care Manag."},{"key":"B26","doi-asserted-by":"publisher","first-page":"453","DOI":"10.1177\/1471301216644114","article-title":"Scanning the conceptual horizons of citizenship","volume":"15","author":"Bartlett","year":"2016","journal-title":"Dementia."},{"key":"B27","doi-asserted-by":"publisher","first-page":"139","DOI":"10.1080\/2156857X.2013.835138","article-title":"From \u201cother\u201d to involved: user involvement in research: an emerging paradigm","volume":"3","author":"Beresford","year":"2013","journal-title":"Nordic Soc Work Res."},{"key":"B28","doi-asserted-by":"publisher","first-page":"723","DOI":"10.1080\/13607863.2017.1317334","article-title":"European working group of people with dementia. Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)","volume":"22","author":"Gove","year":"2018","journal-title":"Aging Mental Health."},{"key":"B29","unstructured":"AlzheimerEurope\n          The Ethics of Dementia Research2011"},{"key":"B30","unstructured":"BradleyM\n          North-South Research Partnerships: Challenges, Responses and Trends\u2014A Literature Review and Annotated Bibliography. Working Paper 1, IDRC Canadian Partnerships Working Paper"},{"key":"B31","doi-asserted-by":"publisher","first-page":"16","DOI":"10.1186\/s40900-018-0100-8","article-title":"The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study","volume":"4","author":"Blackburn","year":"2018","journal-title":"Res Involv Engagem."},{"key":"B32","unstructured":"Ninth Futures Forum on health systems governance and public participation2006"},{"key":"B33","unstructured":"People-Centred and Integrated Health Services: An Overview of the Evidence. Interim Report2015"},{"key":"B34","unstructured":"Process of Translation and Adaptation of Instruments2018"},{"key":"B35","unstructured":"GroupSDW\n          31875718Core Principles for People with Dementia in Research"},{"key":"B36","unstructured":"EWgopw"},{"key":"B37","unstructured":"NIfHResearch\n          National Institute for Health ResearchNIHR annual report 2015\/162016"},{"key":"B38","doi-asserted-by":"publisher","first-page":"e69","DOI":"10.1192\/bjo.2020.49","article-title":"Montessori intervention for individuals with dementia: feasibility study of a culturally adapted psychosocial intervention in Pakistan (MIRACLE)","volume":"6","author":"Chaudhry","year":"2020","journal-title":"BJPsych Open."},{"key":"B39","doi-asserted-by":"publisher","first-page":"1472","DOI":"10.1111\/jgs.15936","article-title":"Feasibility of an intervention to support hearing and vision in Dementia: the SENSE-Cog field trial","volume":"67","author":"Hooper","year":"2019","journal-title":"J Am Geriatr Soc."},{"key":"B40","doi-asserted-by":"publisher","first-page":"348","DOI":"10.1002\/gps.5231","article-title":"Impact of an intervention to support hearing and vision in dementia: The SENSE-Cog field trial","volume":"35","author":"Leroi","year":"2020","journal-title":"Int J Geriatr Psychiatry."},{"key":"B41","unstructured":"WellcomeTrust\n          Community Engagement \u2013 Under the Microscope2011"},{"key":"B42","doi-asserted-by":"publisher","first-page":"j3453","DOI":"10.1136\/bmj.j3453","article-title":"GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research","volume":"358","author":"Staniszewska","year":"2017","journal-title":"BMJ."},{"key":"B43","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1186\/s13063-018-2973-0","article-title":"Individualised sensory intervention to improve quality of life in people with dementia and their companions (SENSE-Cog trial): study protocol for a randomised controlled trial","volume":"20","author":"Regan","year":"2019","journal-title":"Trials."},{"key":"B44","doi-asserted-by":"publisher","first-page":"6","DOI":"10.1186\/s40900-015-0008-5","article-title":"\u201cIs it worth doing?\u201d measuring the impact of patient and public involvement in research","volume":"1","author":"Staley","year":"2015","journal-title":"Res Involv Engagem."},{"key":"B45","doi-asserted-by":"publisher","first-page":"10","DOI":"10.1186\/s40900-019-0144-4","article-title":"\u201cWhat can I do that will most help researchers?\u201d A different approach to training the public at the start of their involvement in research","volume":"5","author":"Staley","year":"2019","journal-title":"Res Involv Engagem."},{"key":"B46","unstructured":"AmadeaTurk\n            Anne-MarieBoylan\n            LouiseLocock\n          A Researcher's Guide to Patient and Public Involvement"},{"key":"B47","unstructured":"EastleighDeveloping Training and Support for Public Involvement in Research2012"},{"key":"B48","doi-asserted-by":"publisher","first-page":"e017124","DOI":"10.1136\/bmjopen-2017-017124","article-title":"Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future","volume":"8","author":"Staniszewska","year":"2018","journal-title":"BMJ Open."},{"key":"B49","unstructured":"Datacollection\n          Quantitative methods. The KAP survey model (Knowledge, Attitude & Practices)"},{"key":"B50","doi-asserted-by":"publisher","first-page":"539","DOI":"10.1186\/s12913-017-2463-1","article-title":"Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis","volume":"17","author":"Shimmin","year":"2017","journal-title":"BMC Health Serv Res."},{"key":"B51","doi-asserted-by":"publisher","first-page":"58","DOI":"10.1002\/gps.4577","article-title":"A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia","volume":"32","author":"Di Lorito","year":"2016","journal-title":"Int J Geriatr Psychiatry."},{"key":"B52","volume-title":"Modern and Traditional Health Care in Developing Societies: CONFLICT and Cooperation","author":"Zeichner","year":"1988"},{"key":"B53","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3389\/fsoc.2019.00038","article-title":"A hierarchy of power: the place of patient and public involvement in healthcare service development","volume":"4","author":"O'Shea","year":"2019","journal-title":"Front Sociol"},{"key":"B54","doi-asserted-by":"publisher","first-page":"24","DOI":"10.1038\/521024a","article-title":"Research: Africa's fight for equality","volume":"521","author":"Nordling","year":"2015","journal-title":"Nature."},{"key":"B55","doi-asserted-by":"publisher","first-page":"343","DOI":"10.3389\/fpubh.2018.00343","article-title":"A journey in capacity building: revisiting the mullins framework for meaningfully engaging patients in patient centered outcomes research","volume":"6","author":"Powell","year":"2018","journal-title":"Front Public Health"},{"key":"B56","doi-asserted-by":"publisher","first-page":"1422","DOI":"10.3390\/ijerph14111422","article-title":"The Communication, Awareness, Relationships and Empowerment (C.A.R.E.) Model: an effective tool for engaging Urban Communities in Community-Based Participatory Research","volume":"14","author":"Ceasar","year":"2017","journal-title":"Int J Environ Res Public Health."},{"key":"B57","volume-title":"Culture's Consequences, Comparing Values, Behaviors, Institutions, and Organizations Across Nations","author":"Hofstede","year":"2003"},{"key":"B58","doi-asserted-by":"publisher","first-page":"69","DOI":"10.1007\/s10459-010-9242-7","article-title":"Doctor\u2013patient communication in a Southeast Asian setting: the conflict between ideal and reality","volume":"16","author":"Claramita","year":"2011","journal-title":"Adv Health Sci Educ Theory Pract."},{"key":"B59","doi-asserted-by":"publisher","first-page":"697","DOI":"10.1136\/bmj.325.7366.697","article-title":"Key communication skills and how to acquire them","volume":"325","author":"Maguire","year":"2002","journal-title":"BMJ."},{"key":"B60","volume-title":"Culture, Health and Illness","author":"Helman","year":"1994"},{"key":"B61","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1080\/15265161.2018.1557275","article-title":"Intersectionality in clinical medicine: the need for a conceptual framework","volume":"19","author":"Wilson","year":"2019","journal-title":"Am J Bioeth."},{"key":"B62","doi-asserted-by":"publisher","first-page":"413","DOI":"10.1016\/S0140-6736(20)30367-6","article-title":"Dementia prevention, intervention, and care: 2020 report of the Lancet Commission","volume":"396","author":"Livingston","year":"2020","journal-title":"Lancet."},{"key":"B63","unstructured":"Briefing Notes for Researchers: Involving the Public in NHS, Public Health and Social Care Research2012"},{"key":"B64","doi-asserted-by":"publisher","first-page":"e030933","DOI":"10.1136\/bmjopen-2019-030933","article-title":"Mixed methods implementation research of cognitive stimulation therapy (CST) for dementia in low and middle-income countries: study protocol for Brazil, India and Tanzania (CST-International)","volume":"9","author":"Spector","year":"2019","journal-title":"BMJ."},{"key":"B65","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1037\/a0016401","article-title":"Cultural adaptation of treatments: a resource for considering culture in evidence-based practice","volume":"40","author":"Bernal","year":"2009","journal-title":"Prof Psychol Res Pract."},{"key":"B66","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/13607863.2019.1695742","article-title":"Psychosocial interventions for dementia in low-and middle-income countries (LMICs): a systematic review of effectiveness and implementation readiness","author":"Stoner","year":"2019","journal-title":"Aging Mental Health."},{"key":"B67","doi-asserted-by":"publisher","first-page":"311","DOI":"10.1111\/j.1468-2850.2006.00043.x","article-title":"A heuristic framework for the cultural adaptation of interventions","volume":"13","author":"Barrera","year":"2006","journal-title":"Clin Psychol Sci Pract."},{"key":"B68","doi-asserted-by":"publisher","first-page":"944","DOI":"10.1177\/1471301218789292","article-title":"Patient engagement in research related to dementia: a scoping review","volume":"17","author":"Bethell","year":"2018","journal-title":"Dementia."},{"key":"B69","doi-asserted-by":"publisher","first-page":"e005234","DOI":"10.1136\/bmjopen-2014-005234","article-title":"Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation","volume":"4","author":"Gamble","year":"2014","journal-title":"BMJ Open."},{"key":"B70","doi-asserted-by":"publisher","first-page":"e0128817","DOI":"10.1371\/journal.pone.0128817","article-title":"What difference does patient and public involvement make and what are its pathways to impact? Qualitative study of patients and researchers from a cohort of randomised clinical trials","volume":"10","author":"Dudley","year":"2015","journal-title":"PLoS ONE."},{"key":"B71","doi-asserted-by":"publisher","first-page":"190","DOI":"10.1186\/s13063-015-0667-4","article-title":"A little more conversation please? Qualitative study of researchers' and patients' interview accounts of training for patient and public involvement in clinical trials","volume":"16","author":"Dudley","year":"2015","journal-title":"Trials."},{"key":"B72","doi-asserted-by":"publisher","first-page":"391","DOI":"10.1017\/S0266462311000481","article-title":"The GRIPP checklist: strengthening the quality and transparency of reporting for patient and public involvement in research","volume":"27","author":"Staniszewska","year":"2011","journal-title":"Int J Technol Assess Health Care."},{"key":"B73","doi-asserted-by":"publisher","first-page":"1177","DOI":"10.1111\/hex.13096","article-title":"Evaluation of a research awareness training programme to support research involvement of older people with dementia and their care partners","volume":"23","author":"Miah","year":"2020","journal-title":"Health Expect."},{"key":"B74","doi-asserted-by":"publisher","first-page":"209","DOI":"10.1177\/1355819615612510","article-title":"Evaluation of public involvement in research: time for a major re-think?","volume":"21","author":"Edelman","year":"2016","journal-title":"J Health Serv Res Policy."},{"key":"B75","doi-asserted-by":"publisher","first-page":"424","DOI":"10.1111\/j.1369-7625.2011.00695.x","article-title":"Developing a \u201ccritica\u201d approach to patient and public involvement in patient safety in the NHS: learning lessons from other parts of the public sector?","volume":"15","author":"Ocloo","year":"2012","journal-title":"Health Expect."},{"key":"B76","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1177\/0022167883232011","article-title":"Reflective learning: the key to learning from experience","volume":"23","author":"Boyd","year":"1983","journal-title":"J Humanist Psychol."}],"container-title":["Frontiers in Neurology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2021.637000\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,3,23]],"date-time":"2021-03-23T05:04:42Z","timestamp":1616475882000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fneur.2021.637000\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,3,23]]},"references-count":76,"alternative-id":["10.3389\/fneur.2021.637000"],"URL":"https:\/\/doi.org\/10.3389\/fneur.2021.637000","relation":{},"ISSN":["1664-2295"],"issn-type":[{"value":"1664-2295","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,3,23]]},"article-number":"637000"}}