In India, increasing lifespan and decreasing fertility rates have resulted in a growing number of older persons. By 2050, people over 60 years of age are predicted to constitute 19.1% of the total population. This ageing of the population is expected to be accompanied by a dramatic increase in the prevalence of dementia. The aetiopathogenesis of dementia has been the subject of a number of prospective longitudinal studies in North America and Europe; however, the findings from these studies cannot simply be translated to the Indian population. The population of India is extremely diverse in terms of socio-economic, cultural, linguistic, geographical, lifestyle-related and genetic factors. Indeed, preliminary data from recently initiated longitudinal studies in India indicate that the prevalence of vascular and metabolic risk factors, as well as white matter hyperintensities, differs between urban and rural cohorts. More information on the complex role of vascular risk factors, gender and genetic influences on dementia prevalence and progression in Indian populations is urgently needed. Low-cost, culturally appropriate and scalable interventions need to be developed expeditiously and implemented through public health measures to reduce the growing burden of dementia. Here, we review the literature concerning dementia epidemiology and risk factors in the Indian population and discuss the future work that needs to be performed to put in place public health interventions to mitigate the burden of dementia.

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Changing demography and the challenge of dementia in India.

Background Globally, nearly two-thirds of people with dementia reside in low- and middle-income countries (LMICs), yet research on how to support people with dementia in LMIC settings is sparse, particularly regarding the management of behavioural and psychological symptoms of dementia. Understanding how best to manage these symptoms of dementia with non-specialist approaches in LMICs is critical. One such approach is a non-pharmacological intervention based on the Montessori method. Aims To evaluate the feasibility and acceptability of a culturally adapted, group-based Montessori intervention for care home residents with dementia and their study partners, who were paid care workers in Pakistan. Method This was a two-stage study: a cultural adaptation of the Montessori intervention and a single-arm, open-label, feasibility and acceptability study of 12 participant dyads. Feasibility and tolerability of the intervention and study procedures were determined through the recruitment rate, adherence to the protocol and acceptance of the intervention. Qualitative interviews were undertaken with the study partners. A pre-post exploratory analysis of ratings of behavioural and psychological symptoms of dementia, functional ability and quality of life were also conducted. Results The recruitment and retention rates of people with dementia were acceptable, and the intervention was well tolerated by participant dyads. Findings show a reduction in agitation levels and improvement in mood and interest for the activities. Conclusions Feasibility studies of low-cost, easy-to-deliver and culturally adapted interventions are essential in laying the groundwork for subsequent definitive effectiveness and/or implementation trials for dementia in LMICs, where awareness and resources for dementia are limited.

Montessori intervention for individuals with dementia: feasibility study of a culturally adapted psychosocial intervention in Pakistan (MIRACLE).

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.

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Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia.

Research priority setting aims to collate stakeholder opinion to determine the most pressing research questions. Priority setting exercises influence decisions around research funding, development and policy. We compared published dementia research priority setting exercises from international healthcare systems.

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Comparing international dementia research priorities—Systematic review

Background: There are few evidence-based non-pharmacological interventions adapted for people with dementia (PwD) in lower- and middle-income countries (LMIC). Thus, there is value in culturally adapting existing interventions from other settings. One such intervention for PwD involves hearing rehabilitation, which may improve dementia-related outcomes. Objective: To culturally adapt and evaluate the feasibility and acceptability of a multi-faceted hearing support intervention to enhance quality of life in PwD for a LMIC setting, Pakistan. Design: This was a study in three phases: (1) training and capacity building to deliver the study, including Patient and Public Involvement (PPI); (2) cultural adaptation of the intervention; and (3) delivery of a single-group feasibility study with a pre-test post-test design. Setting: Home-based intervention, in two cities of Pakistan. Participants: Adults aged ≥ 60 with mild-moderate dementia and uncorrected or partially corrected hearing impairment, and their study partners (n = 14). Intervention: An adapted hearing support intervention (HSI) comprising a full assessment of hearing function, fitting of hearing aids, and home-based support from a "hearing support practitioner." Outcomes: Ratings of the feasibility of the study procedures, and acceptability/tolerability of the adapted intervention were ascertained through questionnaires, participant diaries, therapist logbooks and semi-structured interviews. A signal of effectiveness of the intervention was also explored using a battery of dementia-related outcome measures. Results: Following cultural adaptation and capacity building for study conduct and delivery, we successfully implemented all intervention components in most participants, which were well-received and enacted by participant dyads. Acceptability (i.e., understanding, motivation, sense of achievement) and tolerability (i.e., effort, fatigue) ratings and safety of the intervention were within a priori target ranges. Recruitment and retention targets required improvement, due to the COVID-19 pandemic outbreak, as well as the lack of a clear clinical diagnostic pathway for dementia in both sites. Areas for future modification were clearly identified, including: the assessment/delivery logistics circuit; procedures for arranging visits; communication among referring clinicians and the study team. Conclusion: This is the first study in a LMIC of sensory enhancement to improve dementia outcomes. Positive feasibility, acceptability and tolerability findings suggest that a full-scale effectiveness trial, with certain modifications is warranted.

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Salman Karim

Papers

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