Memory Services and Research

1. Memory Services and Research Carol Brayne Institute of Public Health University of Cambridge

2. Summary • Context • Potential • Challenges • Suggestion for way forward

3. What is a memory service Memory services offer: • timely assessment • diagnostic, • therapeutic, • rehabilitation and • support services for people with memory problems/dementia and their carers in a multidisciplinary setting Royal College Psychiatrists (also states that they provide a cost-effective way of increasing the number of people seen for early diagnosis and intervention and help to reduce the stigma associated with dementia and its consequences) All this should be based on solid evidence but most of the evidence is not that strong ….we need to fill the gap

4. Memory services as implementation of strategy • Dementia strategy 02 and 03 • Implementation to be via memory services • Performance will be partly judged on ‘addressing the gap’ …worth more careful look at this

5. Dementia in the population • ~600,000 people with dementia in E&W, where does this estimate come from? • What does it mean? • ~180, 000 new cases per year (E&W) • Very great care required when using such figures • This does not mean a certain number of people ‘should’ be being identified through memory services

6. Context What is research? ‘Structured activity intended to provide new knowledge which is generalisable (i.e. valuable to others in similar situations) and intended for wider dissemination’ NIHR definition (excludes audit, needs assessment, quality improvements, local service based work)

7. Some reasons we should bother with health service based research How else do we know that services are: • Beneficial over defined period (effective) when delivered in usual settings (not as highly motivated or invested in the ideas) • Appropriate • Safe • Sustainable • Least harm • Affordable • Ethical • Timely • Equitable • Worth doing more than other developments which could be achieved with those resources (i.e. value for whole of society) For almost any aspect research should provide evidence that it’s worth doing and in a particular way but opinion/anecdote/ policy often runs ahead of evidence.

8. How does this relate to memory services? • Financial context • All public services will be looking to reduce costs • Non evidence based services will be scrutinised even if protected at present • Evidence syntheses (covering aspects on previous slide) which provide solid evidence of benefit by NICHE are more likely to survive

9. Therefore… • We need research evidence to fill gaps on e.g... - Benefits (and potential harms) of memory services - Who in the perceived ‘gap’ will benefit - How do we make sure it is not the worried well who respond most to the increased attention - What happens to those without a dementia related diagnosis but with other mental health care needs - What is the best configuration of investigation care for whom and where… - What are the outcomes, for whom (society, community, family, person, voluntary sector, private sector)?

10. Evidence generation, why should we get involved? • This kind of research is not about labs – it’s about us all getting involved • The research community cannot generate good evidence from well designed studies for NICHE without working with and alongside service providers and those who are coming into contact with services • In childhood cancer almost every child with a new diagnosis enters into a research programme to ensure recommended care and treatment the best possible, and that it never stands still

11. Is research easy in the NHS? • It depends on… Money available through NIHR (HTA, RfPB etc) Specific budget for research not available for the dementia strategy Some work on evaluation of advisors out at present (unlikely to be possible to stand as anything other than evaluation, not full blown research of NICHE required quality due to timing and budgetary factors) Huge barriers at present in the multilayered process of setting up research However….if the service and the researchers are working together many of these factors can be overcome Evidence suggests that there is considerable value in engaging in high quality research for the service, the patients as well as the researchers.

12. How can we improve the evidence? • By getting together to work out a memory service specific research agenda and aggregated valuable data (akin to cancer registries) • Where exactly are the gaps in knowledge (synthesis of existing evidence) • How can the change in service provision happening now help to fill those gaps • How can we be creative about ‘natural’ experiments? • Joint research/service positions do help • Not do poor quality research in a disjointed manner, this is much more likely to be rejected on quality grounds by processes in which NICHE engages

13. I’m sure you’ll have lots of ideas about what could be done! Possibilities for coordination include DENRON and CLAHRCs which cover mental health for older populations ?next steps?

14. Networks? • Commissioners and providers in networks • Staged changes of provision with careful documentation of key factors • Involvement of all parties • Careful collection of outcomes, not anecdotal but systematic and carefully collected to address bias

15. Thank you for your attention