Title: NIHR Global Health Group on Dementia Prevention and Enhanced Care (DePEC), Newcastle University
Funder: Department of Health and Social Care

Abstract: Ageing is one of Newcastle University's societal challenges focused on 'academic excellence with impact' (translation of evidence into policy and practice). Our ageing research is co-ordinated via Newcastle University Institute for Ageing (NUIA), Europe's largest such centre with 700 researchers, which is located on the innovative Campus for Ageing and Vitality (CAV)(see additional Information). Newcastle's longstanding global excellence in ageing research has been recognised via: • Queen's Anniversary Prize for Higher and Further Education (2009) • £40M (£20m from Government) for a National Innovation Centre for Ageing (PI Louise Robinson) • Regius Professorship in Ageing (2016). Proposed programme Our aim is to develop a NIHR Global Health Research Group on Dementia Prevention and Enhanced Care (DePEC) to be based at CAV. Our programme, delivered via a series of Workstreams (WSs), has specific objectives: Short term objectives WS1: Create a new Global Research Group on dementia risk reduction and improved post diagnostic care (WS1.1) to map current research and care in our partner LMICs (WS1.2). Medium & long term objectives WS2: Develop accurate and simple tools to identify individuals at high risk of developing dementia (WS2.1) and those with undetected dementia (WS2.2). WS3: Establish the foundation for dementia risk reduction research in LMICs by setting up and piloting an intervention dementia research platform in one partner site (Malaysia). WS4: Determine efficient and feasible dementia care models for LMICs (WS4.1) and transferable educational initiatives to develop a caring, competent workforce (WS4.2). WS5: Develop an impact strategy including future priorities for LMICs research, service organisation and workforce development, and a future DePEC NIHR Global Research Unit. Completion of WS1 deliverables (month 6) will determine progress to full programme funding. Detail on individual WS methods is provided below. WS1: Group development and priority setting programme (months(m) 1-6) WS1.1 Establish the group Leads Robinson, Stephan (Newcastle) & Goodson (Malaysia) Methods Workshops and facilitated groups Newcastle University will host an introductory workshop with all partners, and lay representatives, to launch the programme. Facilitated task groups will be held whereby each partner country will present data on population trends in dementia; current care pathways; key dementia research to date (including public health and risk factors), and priority areas for future work. Following this, the program, tasks and milestones will be reviewed and agreed by all partners. WS1.2 Map current research and care pathways and identify priorities Leads Stephan (Newcastle), Goodson (Malaysia), Iype (India) & Ursassa (Tanzania) Methods Delphi consensus and rapid reviews Following the introductory workshop, a series of rapid reviews will be undertaken (if needed) to determine information on: (i) research and knowledge gaps; (ii) dementia care pathways including health prevention services if available and (iii) workforce issues in terms of education and capacity. Each LMIC will undertake a Delphi survey of professional stakeholders, alongside a public/patient consensus exercise, to identify and prioritise key areas for future research and service/workforce development. Findings will be reviewed at a workshop (m6) at Newcastle University Medicine-Malaysia (NUMed). Deliverables For each partner LMIC a summary of: i) dementia-related research and priority areas for future work/funding and workforce training and ii) current dementia care pathways and health prevention strategies, areas of need and future priorities for service improvement and workforce training. WS2: Development & testing of screening tools (m1-20) WS2.1 Models for predicting high risk cases Leads Stephan, Prina (Newcastle, KCL) & Mohan (Malaysia) Methods Longitudinal statistical modelling Modelling will use existing data from Malaysia (South East Asian Community Observatory [SEACO(2)] and Malaysian Elders Longitudinal Research Studies, MELoR(3)), India (data from Health Action for People; HAP(4)) and Tanzania (Hai District Demographic Surveillance Site(5)). We aim to develop simple models, for non specialists to use, to identify people at high risk of future dementia in each partner LMIC. The models will be validated by KCL using existing 10/66 data (6). WS2.2 Tools to identify persons with undetected dementia Leads Gray, Walker (Newcastle), Kamaruzzaman (Malaysia) & Urassa (Tanzania) Methods Co-design and pilot study (Malaysia and Tanzania) Pilot work by members of our group (7,8) in Tanzania, Nigeria and Malaysia, has created and validated a brief (6-item) cognitive dementia screening tool. With 'Open Lab' at Newcastle, we aim to develop and pilot an 'app' for non-specialist dementia 'screening' that includes the above brief tool and a functional assessment scale. Pilot studies in both Tanzania(n=500 people randomly selected from the IDEA study(7)) and Malaysia (n=500 people randomly selected from MELoR(3)) will be undertaken. While the app is likely to need to vary between countries, due to factors such as education, diet, lifestyle and cultural norms, we predict several screening 'items' would work well in all settings. Deliverables i) Dementia risk assessment models feasible for use in partner LMICs. ii) A simple, easy to use app-based tool for identifying undetected dementia in partner LMICs. WS3: Establishing an intervention dementia prevention trial platform (m15-36) Leads Siervo, Gray (Newcastle), & Reidpath, Chaiyakunapruk (Malaysia) Methods Pilot randomised control clinical trial (RCT) Setting SEACO, Malaysia. Sample The 'model' developed in WS2.1 for Malaysia will be used to identify high risk cases as potential participants for a pilot RCT to reduce dementia risk. The specific characteristics of the intervention will be informed by WS1, and Cochrane systematic reviews currently underway in Newcastle; we hypothesise it will comprise combined lifestyle and dietary intervention (physical activity and diet adapted to local cultures/resource availability). See Box 1 for further detail. We will also conduct a cost-effectiveness analysis assessing potential economic value of the intervention strategy. We plan to use a discrete event simulation or Markov model to simulate the natural progression of disease in people in LMICs to track disease severities (e.g. declining cognitive functional capabilities) and their consequences on health outcomes (e.g. incurred costs and healthcare use). Inputs of the simulation will be obtained from literature, the pilot trial, and other public documents to generate health economic findings. Deliverables i) Research platform for future intervention trials on dementia risk reduction. ii) Modelling of economic consequences of intervention strategies for people at risk of dementia. WS4: Post-diagnostic dementia care: efficient & sustainable models (m9-36) Leads Robinson, Corner (Newcastle), Goodson (Malaysia) & Iype (Iindia) WS4 addresses the 2016 World Alzheimer Report recommendations for efficient, task-shifted dementia care in LMIcs, and a competent workforce to deliver such care (9,10). WS4.1 Developing efficient, feasible and sustainable dementia care pathways for LMICs Methods Evidence synthesis from rapid appraisal/systematic reviews Search methods e-databases (MEDLINE/EMBASE/CINAHL/PsycINFO/Cochrane), grey literature, policy sources (e.g. World Alzheimer Reports) and use of new e-tools, being developed in the NIHR funded UK MODEM study (www.modem-dementia.org.uk), to determine affordable and sustainable models of dementia care. Outcome measures Patient/carer outcomes (e.g. quality of life, burden), professional/practice outcomes and health service outcomes (e.g. costs, service usage) and identification of components/factors linked to efficient, sustainable models. WS4.2 Building the workforce to deliver future dementia care Methods National surveys and workshops Newcastle University (Robinson, Corner) has developed a Dementia Innovation Hub, which brings together evidence and experience to develop innovative, practical ways for support. Flagship projects include: a dementia Massive Open Online Course (~15,000 in 69 countries); an online course for working carers; Dementia e-Roadmap (supports effective navigation of local services) and a webinar series. Each partner LMIC will undertake a survey of dementia knowledge/skills/attitudes among their workforce and identify educational initiatives under development. A 3-day workshop will be hosted by Monash University-Malaysia (m21-24) to determine each country's priorities for workforce development and future strategic solutions. Deliverables i) Recommendations for efficient and feasible dementia care pathways for partner LMICs. ii) Summary of workforce training needs and future strategic development plan for partner LMICs. WS5: Pathways to impact: Translational outputs and future research priorities (m7-36) Leads Robinson, Manthorpe (UK), Allotey, Goodson (Malaysia), Iype (India) & Urassa (Tanzania) As part of WS1.2, we will also undertake a consultation exercise with partner LMICs to i) map research dissemination methods and networks ii) seek individual views on 'resource gaps' and useful translational outputs from the program. Within WS1.2 Delphi consensus, we will undertake a prioritisation exercise to determine the key translational outputs; results will be fed back to the programme group and partner organisations for validation. Our final list of proposed 'outputs' will be reviewed by the programme External Advisory Committee (see Governance). Deliverables may include: i) Carer e-learning resources; care pathways; service cost projection models ii) Individual LMIC strategic brain health initiative and iii) Future bids including a Global Health Unit Health.

Lay abstract: The problem By 2030, there will be ~75 million people with dementia. In the absence of a cure, global policy is increasingly aimed at: • Public health approaches to reduce future numbers developing dementia and • Improving post-diagnostic care. The majority (63%) of people with dementia live in the world’s poorest countries, defined as low and middle income countries (LMICs), yet they have the least capacity to cope with the predicted demand due to limited, or no access, to preventative healthcare and dementia specific services. Findings from high-income countries show that targeting risk factors for heart/stroke disease can reduce dementia risk. We do not know whether this also applies for LMICs or whether their healthcare systems are equipped to deliver such preventative care. Post-diagnostic dementia care, defined as holistic, integrated continuing care in the context of declining function and increasing family carer needs, if present, varies considerably. Worryingly the 2016 World Alzheimer Report found the current specialist-led model of dementia care unaffordable and unsustainable, especially for LMICs. It urged more efficient 'task-shifted/task-shared' dementia care i.e. increased, and more appropriate use, of GP and community services as in other chronic illness care. Our solution We will creat a Global Health Research Group on Dementia Prevention and Enhanced Care (DePEC). Our goal is to reduce the personal and societal burden of dementia by developing approaches to reduce future numbers getting dementia and develop more efficient post-diagnostic care. We will bring together: dementia experts in public health/primary care (Newcastle), global epidemiological 10/66 dementia research group from King's College London (KCL),with a strong existing LMICs network and new LMICs partners, one from each economic category (upper LMIC-Malaysia, LMIC-India and least developed Tanzania) to create a global, multi-disciplinary translational research group. Proposed research Our work programme is underpinned by specific research objectives to be achieved through a series of separate, but interlinked, Workstreams (WSs). Short term Objective 1 (WS1) Create a new Global Research Group on dementia risk reduction and improved post-diagnostic care to map existing dementia research and care in our partner LMICs. Medium & long term Objective 2 (WS2) Develop simple tools to identify people at high risk of developing dementia and those with undetected dementia. Objective 3 (WS3) Establish dementia risk reduction research in LMICs by setting up and piloting an intervention to reduce dementia risk. Objective 4 (WS4) Determine efficient and feasible dementia care models for LMICs and transferable educational initiatives for a skilled workforce. Objective 5 (WS5) Develop an impact strategy for each partner LMIC, including research priorities, service organisation and workforce development, and the creation of a future NIHR Global Research Unit. Measurable benefits include: 1. Consensus (academic, stakeholder and policy maker) strategies to reduce future dementia risk including a brain health initiative plan to inform government strategies 2. Evidence-based, novel approaches to identify those at risk of, or with, dementia to reduce future burden of disease in the population 3. Recommendations for efficient, feasible dementia care pathways 4. Innovative, practical methods for training generalist workforces and supporting family carers to ensure lasting impact.

Research activity codes: 8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: NEUROLOGICAL