Public and patient priorities for research: an international perspective

1. Public and patient priorities for research: an international perspective Glenn Rees Ellen Skladzien Alzheimer’s Australia Astrid van der Schot Marco Blom Alzheimer Nederland James Pickett Matt Murray Alzheimer’s Society, UK

2. Three National Alzheimer’s Organisations… …all fortunate to be able to support research…all involve people with personal experience of dementia in research …all have recently asked consumers what are their priorities for research Alzheimer’s Australia • To provide a consumer perspective. • To be a resource • To remove barriers • Active role in all stages of research projects (not just as participants) • Involvement when consumer input adds value but not as a token • Alzheimer’s Society UK • Carers, former carers and people with dementia • Steer priorities of research programme • Review research applications • Monitor funded projects • Disseminate research findings • Represent the Alzheimer’s Society

3. PRIORITY SELECTION PROCESS Alzheimer’s Australia Email Correspondence Canvas member thoughts Face-to-Face Meeting Discussion with researchers to identify topic areas Focus on outcomes to be achieved by projects in each priority area Voting by members on top priorities Follow-up Discussions Further refinement with sub-groups

4. CONSUMER PRIORITY AREAS Alzheimer’s Australia Advance Care Planning To improve promotion and uptake of advance care planning for people with dementia in primary and community care Non-pharmacological approach to responding to BPSD To increase awareness and uptake of non-pharmacological approaches to managing behavioural and psychological symptoms of dementia Support for carers To improve the physical and mental health of carers Palliative approach to dementia care To raise community awareness about palliative approaches to dementia care throughout all stages of the illness Timely diagnosis To improve detection and management of dementia in primary care

5. New Policy Period • New Research Agenda Process: • 2 Focus groups people with dementia • 2 Focus groups carers • 2 Focus groups healthy elderly people • Personal interviews researchers Steering group using two-stage Delphi type process. • 1st: integrated shortlist per theme • 2nd: priority setting per theme Result: Six overall themes and priorities within each theme

6. 4. Medication/treatment • medical intervention, development new medications • medication to slow progression 5. Prevention • lifestyle • prevention 6. Care • improve organisation of care (integrated care) • nursing homes (care, differences, alternatives) • training/education carers 1. Diagnostics • ’fast/timely’ when symptoms occur • development screening • improvement cognitive testing, combining methods 2. Mechanisms • progress of disease • genetics • slow/fast progressors 3. Psycho-social aspects • effects of interventions • interventions in lifestyle • technology to improve quality of life

7. Alzheimer’s Society Process: Two stage paper/email based survey • What are your priorities for research? • What challenges have you faced as a person with dementia or carer? Stage 1 – open answered questions (65 responses) Analysis and identification of common themes Stage 2 – scoring and prioritization (91 responses) Result: Prioritized list for overall research and separate list of priorities for social care

8. Priorities for research • Top 5 (from 13 themes) • Development of new drug treatments • Stem cell research • Research in care home settings • Diagnostic tests and biomarkers • Research regarding care in hospitals

9. Challenges for social care research • Top 5 (from 25 themes) • Improving care in residential and care home settings • Maintaining independence to keep living at home • Care in hospitals • Timely diagnosis • Dignified end-of-life care

10. Any commonality? • Making a timely diagnosis of dementia, new diagnostics/ biomarkers and supporting primary care. • Beyond this different themes emerge (different questions, phrasing, methodologies and priorities for whom). End of life care Health and wellbeing of carers Treatments and cures; care and prevention • Research that aims to go beyond publication in scientific journals. • Research that produces tangible results that can improve lives of people with dementia and their carers.

11. Implementing priorities • Specific call for knowledge translation projects • 3 projects currently underway • 5 to be announced shortly • One grant per year selected by consumers • Broadening remit of research portfolio to include mechanisms of disease and drug treatments • James Lind Alliance partnership • Priorities  unmet gaps in knowledge • Commissioned research, e.g CBT for carers • Focus groups and working in partnership on priority areas

12. Thank you James Pickett james.pickett@alzheimers.org.uk Astrid van der Schot A.vanderSchot@alzheimer-nederland.nl Glenn Rees Glenn.Rees@alzheimers.org.au