1. Dementia research: knowledge into care Carol Brayne Director Institute of Public Health On behalf of CC75C and CFAS groups

2. Numerators

3. How do we create evidence on which to base decisions? Some examples: Anecdote Descriptions of ‘best practice’ collected from experienced experts Collections of actual experience such as case series Observing particular groups/services and collecting information Systematic approach

4. Framing questions Systematic approaches need a specific question or questions to be asked Then research/evidence synthesis can be designed to answer that question as best as possible Once the question is framed we can work out whether it is answerable currently

5. Impossible questions Is dementia more common now than forty years ago? Why? Is respite care cost effective? Why? How can we make these questions answerable?

6. Making questions answerable Deconstruct them Is respite care cost effective? Need to define respite care and cost effective, then define particular group offered respite care, then the nature of the intervention such as type of location, length of stay, circumstances of offering respite care etc Then observational evidence can be accrued and collated Then to answer the question definitively all the experience can be used to design a trial with collection of all the necessary information Will the results be relevant to those to whom any recommendation will be applied

7. What have we been working on in this area for last 25 years? Two major studies + others CC75C CFAS

8. Cambridge City over-75s Cohort – 25 years old Original intention evaluation of community resource team impact on care quality and outcomes Prevalence, incidence, risk Driving behaviours Falls Frailty End of life Neuropathology Originally called Hughes Hall Project for Later Life, Then Cambridge Project for Later Life

9. Cambridge City over-75s Cohort Population-based - community and care homes Changes in cognition and function with ageing Began 1985/7 screening for dementia (O’Connor, Pollitt) Repeated surveys 95% consent Year 0, highly representative Latest survey just completed, all over 100 Current work on QoL/EoL survey = Year 21 Brain donation programme since 1986

10. Data collected : Cognitive function Socio-demographics Family / social contacts Service contact Mood / subjective well-being Activities of daily living Physical health Medication Detailed neuropathology in 240 donors

12. Incidence in Europe, meta-analysis (Jorm, 1998)

13. Response profiles as a function of dropout and death

15. MRC Cognitive Function and Ageing Study (www.cfas.ac.uk)

16. MRC CFAS – brief introduction Longitudinal two wave two phase study initially 13,004 individuals (5 identical centres) 5,300 individuals (1 non identical centre) Aged 65 and above in 1991, equal weight Rural and urban sites Population sampling including institutions ~ 80% response rate at each stage Followed up at ‘regular’ intervals

17. MRC CFAS

18. S0 Prevalence Screen N= 13004 S2 Incidence Screen N= 7176 A0 Prevalence Assessment N= 2640 F1 Annual Follow-up N= 920 C2 Combined Screen/Assess N= 1651 A2 Combined Screen/Assess N= 1463 F3 Annual Follow-up N= 590 C6 Combined Screen/Assess N= 1736 C8 Combined Screen/Assess N= 390 C10 Combined Screen/Assess N= 3145 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 THE MRC CFAS STUDY DESIGN 1991

19. Prevalence by centre MenWomen Adapted from MRC CFAS 1998

20. Percentage below MMSE cutpoints by age 0 10 20 30 40 50 60 70 80 65-6970-7475-7980-8485-8990+ 17/18 21/22 24/25 % Age group

21. Clinical norms

22. % of Population 65-7475+ menwomenmenwomen head injury71888 HBP34323725 angina14161016 heart attack915614 stroke86411 diabetes6586 Prevalence of reported vascular and other risk factors

23. Risk Factors for Incident Dementia in CFAS Age (90+ year vs 65+ years) 25.6 (11.6-56.9) Self reported health (Poor vs good) 3.9 (2.2-6.4) Parkinson’s disease (Yes vs No) 3.5 (1.3-9.3) Stroke (Yes vs No) 2.1 (1.1-4.2) Education (<9 vs 10+) 1.9 (1.3-2.2) Sex (women vs men) 1.6 (1.1-2.4) NOTE1 Social Class and other medical/family history (including genetics) were not found to be strongly associated with dementia NOTE2 Alcohol and smoking (never, past, current) neither strongly predictive or protective

24. How does mild cognitive impairment do as a clinical label? Review of Clinic vs. Population-Based Samples Clinic Based Outcome Population Based Outcome

25. Dementia distribution for people over 65 years old in 2010 Source: Population size come from ONS Statistics. Prevalence of Dementia come from Dementia UK full report 2007.

26. Estimated Dementia distribution for people over 65 years old in 2050 Source: ONS Statistics. Dementia UK full report 2007.

27. Policy and local service input Director of Public Health Reports annually Joint Strategic Needs Assessment National Strategic Framework Dementia UK and revised estimates Ministerial Advisory Group on Dementia Research

28. THE CAMBRIDGE CITY OVER-75s COHORT STUDY (CC75C) Website: with links to published papers and abstracts: - prevalence, incidence + changes in cognitive impairment - neuropsychology, neurobiology, genetics - clinical studies e.g. hospital and other service use carers of demented relatives disability depression the “oldest old” attitudes to dying - neuropathological investigations International Journal of Epidemiology cohort profile (2007) http://www.cc75c.group.cam.ac.uk

29. Current MRC CFAS collaborative group Cambridge Department of Public Health (Barnes, Brayne, Keage, McDougall, Savva, Stephan, Zaccai, Zhao, Xie) & MRC Biostatistics Unit (Gao, Johnson, Matthews, Muniz) Exeter (Melzer, Frayling) Gwynedd and Liverpool (McCracken) Herriott Watt (McDonald) IoP (Dewey) Leicester (Jagger, Matthews) Newcastle (McKeith, Bond, Polvikovski) Nottingham (Lowe) Oxford (Evans, Esiri, Wilcock, Clarke) Queen Mary (Parry), LSE (Comas Herrera, Wittenberg) Sheffield (Ince, Forster, Wharton) Southampton (Nicoll, Stewart) Lay members: Mr Simon Harrison, Mrs Brenda Barber GSK (BPSD analysis support) Davidson, Ishihara