How Alzheimer’s Society Has Supported a UK Government Initiative to Prioritise Dementia Research

1. How Alzheimer’s Society Has Supported a UK Government Initiative to Prioritise Dementia Research Matt Murray, Alzheimer’s Society Barbara Woodward-Carlton, Alzheimer’s Society Research Network volunteer 9 March 2012

2. Alzheimer’s Society Research Network • Formed in 1999 • 225 carers, former carers and people with dementia • Demographically diverse • Various roles: • Steer priorities of research programme • Review research applications • Monitor funded projects • Disseminate research findings • Develop research proposals • Represent Alzheimer’s Society 9 March 2012

3. Prioritising Dementia Research in the UK Campaigning and lobbying pre 2009 National Dementia Research Summit in 2009 Ministerial Advisory Group on Dementia Research 2009-2011 National Institute for Health Research Dementia Themed Call 2011 Route Map for Dementia Research launched June 2011 More and better research into dementia? Public and Patient Involvement 9 March 2012

4. Prioritising Dementia Research in the UK Campaigning and lobbying pre 2009 National Dementia Research Summit in 2009 Ministerial Advisory Group on Dementia Research 2009-2011 National Institute for Health Research Dementia Themed Call 2011 Route Map for Dementia Research launched June 2011 More and better research into dementia? Public and Patient Involvement 9 March 2012

5. Ministerial Advisory Group on Dementia Research (MAGDR) • Full group chaired by Minister for Care Services. • Representation on group: charities, industry, research funders, government and lay people affected by dementia. • 5 Subgroups: • Priority Research Topics • Raising Public Awareness • Securing Available Funding • Better Ways of Working • Translation of Research. 9 March 2012

6. Key outcomes of MAGDR • Route Map published June 2011 with 5 specific workstreams. • Increased funding for dementia research- strategic uplift • Research Network volunteers were instrumental in ensuring: • Urgency of action • Focus on translation and dissemination • Most important research areas for people with dementia and carers are priority,e.g. early diagnosis and antipsychotics. • Research Network volunteers contributing on project boards. 9 March 2012

7. Providing PPI support to NIHR Themed Call Opportunity for Alzheimer’s Society to support researchers who are applying for funding. Themed call across 7 NIHR programmes announced January 2011. ‘Strategic uplift’ for high quality dementia applications 9 March 2012

8. NIHR PPI Workshop- May 2011 • Training day, co-facilitated by NIHR staff. • Innovative ‘speed dating’ style session involving 30 researchers and 40 Research Network volunteers. • Personal experience of participants matched to researcher’s proposals. • In depth discussions in afternoon with further involvement agreed. 9 March 2012

9. PPI for Dementia Themed Call • Advertisement to dementia research community via NIHR. • Out of 121 proposals received by NIHR, 43 were supported by Alzheimer’s Society. • 13 Research Network co-applicants. • Role of Alzheimer’s Society in providing PPI in funded applications: • Facilitate focus groups and consultations • Membership on project management committees • Dissemination of research findings Improved outcomes for people with dementia and carers • Funding decisions expected March-April 2012. 9 March 2012

10. Contact details Matt Murray Alzheimer’s Society Research Network Coordinator Address: Alzheimer’s Society Devon House 58 St Katharine’s Way London United Kingdom E1W 1LB Telephone: +44 (0) 207 423 3603 Email: matt.murray@alzheimers.org.uk 9 March 2012