National Institute for Health Research Dementia Research Workshop

1. National Institute for Health ResearchDementia Research Workshop 14 January 2011

2. NIHR DementiaResearch Workshop The Ministerial Advisory Group on Dementia Research Chair: Professor Alistair Burns National Clinical Director Dementia Department of Health 14 January 2011

3. NIHR DementiaResearch Workshop Priority Topics for Dementia Research Professor Chris Kennard Chair, MRC Neurosciences and Mental Health Board & University of Oxford 14 January 2011

4. NIHR DementiaResearch Workshop Membership and process • Membership • Research Councils • Govt Depts • Research Charities • National clinical networks • Expert chairs of Cause, Care, Cure sessions from 2009 Ministerial Dementia Summit • Discussions of the Subgroup were informed by: • the 2008 MRC Strategic Review of Neurodegeneration Research • the 2009 National Dementia Strategy • updates from Subgroup members on current research activities • outputs from the Ministerial Dementia Summit held in July 2009 14 January 2011

5. NIHR DementiaResearch Workshop Priorities identified (1) • Understanding disease mechanisms and progression • to promote the development of new therapeutic strategies • genetic and molecular pathways & interaction with the environment • interaction of pathologies across the dementias • predictive animal and cellular models - biomarkers of disease development and progression will be critical to this • long-term promise of stem cell research for therapy, though in the near-term its impact will be in disease-modelling • what is the most beneficial time-window for treatment efficacy? • increased donation of brain tissue is needed, tied to detailed clinical data 14 January 2011

6. NIHR DementiaResearch Workshop Prioritiesidentified (2) • Longitudinal population studies • to increase our understanding of the ageing process, and to identify the risk and protective factors relating to dementia. • near-term opportunity to better utilise existing population studies • Recruitment of research participants • creation of a national register of patients? • routinely provide the patient with the opportunity to be asked to participate in research at the point of diagnosis? • to increase clinical studies of people with mild cognitive impairment, need to address challenges of undertaking multi-centre studies, and the regulatory issues relating to the use of surrogate markers • stratification of study participants, to separate out the various dementia sub-types, to better target and evaluate intervention studies. 14 January 2011

7. NIHR DementiaResearch Workshop Priorities identified (3) • Prevention strategies • key preventative factors include a healthy diet, promoting physical and cognitive activity and controlling cardiovascular risk factors -promotion through public health interventions focused on 'healthy body, healthy mind'? • Behavioural and psychological symptoms and interventions • increase focus on research into behavioural and psychological symptoms, particularly with regard to managing challenging behaviour and improving quality of life. • need better evaluation of non-drug interventions for behavioural disturbance, including improved training in care homes. • translating efficacious psychological and non-drug interventions to real-world settings • evaluation of the impact of care received by people with dementia in general hospitals. 14 January 2011

8. NIHR DementiaResearch Workshop Priorities identified (4) • Promoting research in care homes • to address comorbidity, especially in relation to vascular disease, and to improve the physical health of patients with dementia • research into falls prevention • assessments of the effectiveness of interventions undertaken by carers - improved outcome measures are needed. • the development of research networks in this sector would assist access to research populations and encourage care homes to share expertise and information • relatively little research on end of life and palliative care for people with dementia - current hospice care models need to be developed for transfer to social care settings. 14 January 2011

9. NIHR DementiaResearch Workshop Increasing Public Support and Participation Rebecca Wood Chief Executive, Alzheimer’s Research Trust Professor Clive Ballard Head of Research, Alzheimer’s Society 14 January 2011

10. NIHR DementiaResearch Workshop Workgroup 2 Identifying ways of raising public awareness of, and support for, dementia research and increasing public engagement in dementia research via recruitment to trials and other studies or via tissue donation  Workgroup members: Dr Craig Ritchie, Joe Korner (Stroke Association), Steve Ford (Parkinson’s UK), Professor James Goodwin (Age UK) 14 January 2011

11. NIHR DementiaResearch Workshop Key topics • Communication • Prevention of dementia • Engagement of more people in research • Case registers (Work Group 4) • Brain Banking 14 January 2011

12. NIHR DementiaResearch Workshop Communication • Targeted communications • Develop specific communications to improve awareness of importance of dementia research • Ensure communications are relevant to all audiences e.g. focus on prevention to engage a younger audience • Develop key messages • Messages based on robust evidence • Work closely with journalists and communications experts to refine and improve key messages and optimise their use • Communication channels • Utilise diverse channels and communication methods to reach more audiences e.g new media including social media, audio-visual channels, interactive engagement • Tailor communication channel to target audiences • Seek partnerships • Develop partnerships with likeminded organisations to strengthen communications • Capitalise on significant overlap between messaging for cardiovascular health and prevention of dementia 14 January 2011

13. NIHR DementiaResearch Workshop Prevention • Develop evidence-based, engaging public health messages • Exercise, weight, diet • Proper management of medical risks • Recognition of role of primary care and secondary services • Management of blood pressure, cholesterol and additional conditions (depression, diabetes) for primary, secondary and tertiary prevention • Healthy lifestyle messages • Explore opportunities for implementation of research into prevention of dementia 14 January 2011

14. NIHR DementiaResearch Workshop Brain Banking • Clear communication of scientific importance • Develop strategies to increase number of donors • Develop as platform for building capacity amongst neuropathologists • Standardise brain banking processes to enable widespread use of material • Provide a valuable resource to enable researchers to address the most important research questions 14 January 2011

15. NIHR DementiaResearch Workshop Improving Access for Funding and Support Dr David Cox Deputy Director, NIHR Research Faculty Department of Health 14 January 2011

16. NIHR DementiaResearch Workshop Improving access to funding The task • Identify factors inhibiting access to existing resources • Consider how partners might address these issues • Identify potential quick wins • Work up plans for short term deliverables • Develop specific proposals for less tractable issues 14 January 2011

17. NIHR DementiaResearch Workshop Improving access to funding Issues considered • Funding opportunities • Research capacity and capability • Organisation and culture • Infrastructure 14 January 2011

18. NIHR DementiaResearch Workshop Improving access to funding Funding opportunities • Issue: perception that dementia research funding bids less successful • Access to funding: highlight opportunities for different types of research short term • Access to information/advice on developing more competitive applications quick win • Advance warning of strategic requirements of calls quick win • Dementia research web portal short term deliverable • Publicise opportunities e.g. this workshop quick win • Communicate importance of dementia for FP7 funding short term and adequate funding in FP8 longer term 14 January 2011

19. NIHR DementiaResearch Workshop Improving access to funding Research capacity and capability • Issues: specific capacity limitations and shortages of key staff • Increase exposure to dementia research issues e.g. attract clinical trainees into research at an early career stage (ACF) quick win • Involve nursing academics in planned dementia workshops short term • Identify needs for capacity building in key disciplines and settings longer term 14 January 2011

20. NIHR DementiaResearch Workshop Improving access to funding Organisation and culture • Issues: industry links, data sharing, pooling of funds, leadership • Round table academic/industry/charity discussion on data sharing quick win • Role for NOCRI (National Office for Clinical Research Infrastructure) • Suggest to industry targets for new drugs and devices quick win • Disseminate existing protocols for data sharing quick win • Map data resources short term • Charities to discuss partnership on case by case basis longer term • Leadership – being taken forward by ‘Better ways of working’ group 14 January 2011

21. NIHR DementiaResearch Workshop Improving access to funding Infrastructure • Issue: stronger industry links with experimental medicine facilities • Convene industry brainstorming session also involving charities quick win Conclusion • We continue to work together to identify ways in which the community can gain easier access to funding and support. • The working sub-group has identified a number of quick wins and short term deliverables. • These actions form part of a wider programme of MAGDR- sponsored activity 14 January 2011

22. Developing Better Ways of Working Professor Martin Rossor Director, NIHR Dementia and Neurodegenerative Diseases Research Network 14 January 2011

23. Priority Setting 2 ministerial meetings, 4 subgroup meetings with wide representation and broader consultation • Key priority areas identified: • Integration of patient care and research • Consistent, coordinated local research support networks embedded in core care services • Prospectively identifying patients interested in research and signposting from core care services • Research in care homes • Increasing leadership

24. Project Management Key priorities being developed via project management boards with key stakeholders involved • Coherent, consistent set of local research networks across country • Capacity & capability in core services to consent patients to registers • Toolkit for development of local registers • Capability to federate local registers • Tool kit for researchers and care homes • Network of research enabled care homes • Map existing and emerging leadership • Identified leaders onto NIHR Leadership programme

25. NIHR DementiaResearch Workshop Improving the Impact of Research on Treatment and Care Barbara Woodward-Carlton Quality Research in Dementia Alzheimer’s Society 14 January 2011

26. NIHR DementiaResearch Workshop Applying the Research Specific task: To suggest ways to improve the “translation” of research into better treatment and care by developing stronger links between academics and research “end users” and working with existing bodies to improve knowledge transfer across the health and social care sector. 14 January 2011

27. NIHR DementiaResearch Workshop Membership Clive Ballard: Alzheimer’s Society Alistair Burns: National Clinical Director for dementia James Goodwin: Age UK Martin Green: English Community Care Association Joe Korner: Stroke Association Louise Robinson: University of Newcastle Noreen Siba: International Longevity Centre George Tadros: Royal College of Psychiatrists Rebecca Wood: Alzheimer’s Research Trust Barbara Woodward Carlton: Lay member 14 January 2011

28. NIHR DementiaResearch Workshop Outcomes of the group • Two face to face meetings • Three general themes emerged: • key importance of educational curricula • dissemination of research findings • linking research to outcomes • Central role for carers at all stages • Barriers to implementation • make best use of existing infrastructure • absence of mandatory sanctions • need for incentives • lack of awareness with commissioners 14 January 2011

29. NIHR DementiaResearch Workshop Specific suggestions for translation In line with the current outcomes focused dementia implementation plan: General Hospital Care: better dissemination of research evidence for improved care Reduction of antipsychotic use: dissemination of research evidence Support for carers: publication of the independent evaluation of demonstrator sites programme Timely diagnosis: promotion of e-GP resources to primary care, adoption of a screening tool (eg GPCOG) Care Homes: Training of staff using workforce advisory group Others: prevention end of life care 14 January 2011

30. NIHR DementiaResearch Workshop Next steps Wider consultation Harmonisation with NHS and social care architecture Translation of research in social care 14 January 2011

31. National Institute for Health ResearchDementia Research Workshop 14 January 2011