Partners
DePEC brings together:
i) Newcastle academics with interests in dementia research in LMICs but who have to date worked in relative isolation with one partner LMIC (Robinson/Stephan/Siervo–Malaysia; Walker/Gray/Paddick–Tanzania)and
ii) National expertise in dementia healthcare research with a well-established, global epidemiological dementia research network, the 10/66 Dementia Research Group, at KCL and their Social Care Research Unit.
Newcastle University has strong strategic/scientific partnerships with Malaysia via the NuMED Campus Malaysia, Monash-University Malaysia and the University of Malaya, all partners in this bid. Monash Malaysia has strong collaborative links with our India site, HAP (non-governmental organisation), and it is through them that the Indian partnership has been realised. Professor Walker has worked with the African partners (Tanzania) for over 20 years, researching the epidemiology of neurological disease; DePEC will expand these links to include the dementia research group at Newcastle University.
All partners have contributed to prioritisation of the research topic (risk reduction and post-diagnostic care) and WS development; each will be represented on the Project Management Committee (PMC) (see structure and governance) and co-lead WSs.
We will also develop new, as well as expand existing, relationships with charities and NGOs in each partner country to help with dissemination activities and development of programme outputs e.g. brain health initiative plan on dementia risk reduction to inform government strategy on dementia risk reduction and improving post-diagnostic care in each partner country. Importantly DePEC will strengthen existing team links with the following organisations:
• Alzheimer’s Disease International (ADI) and Help Age International
• International Longevity Centre (ILC) Network (NCL is a partner of ILC-UK)
• Global Observatory of Dementia and Ageing Care
• Alzheimer’s Disease Foundation Malaysia
• Asia Pacific Evidence-based Medicine
• World Health Organization
ADI has already agreed to help develop, and assist with, dissemination; their contribution is included in our budget (see letters of support).
Public Patient Involvement (PPI)
The origin of DePEC came from people with dementia and family carer members in the NIHR DeNDRoN Primary Care Group who listed prevention and post-diagnostic care in their top 10 future research priorities. More recently the Alzheimer's Society/James Lind Alliance Research priority exercise listed effective care and translation into practice as 2 of their top 3. PPI during the project will be co-ordinated by Corner (NIHR INVOLVE national member) and Manthorpe who will assist partner LMICs in this area to:
• Identify 1-2 PPI representatives to become members of the PMC and
• Establish a local PPI committee to: i) shape the content and design of materials e.g. dementia screening app and newsletters; ii) participate in workgroups and iii) inform dissemination activities and outputs.