1. DEMENTIA RESEARCH: KNOWLEDGE INTO CARE The Trinity Centre, Cambridge 26 September 2011

2. Cambridge City over-75s Cohort Study - a quarter century of research with “older old” people and their carers Jane Fleming on behalf of the CC75C study collaboration Department of Public Health & Primary Care, University of Cambridge, Institute of Public Health, Forvie Site, Robinson Way, Cambridge CB2 2SR

3. Survey 1 Year 0 (n=2610) Cohort followed-up (n=2166) Survey 2 Year3 (n=1177) CAMDEX 1.1 Year 0 (n=530) CAMDEX 1. 2 Year 2 (n=217) CAMDEX 1.3 Year 3 (n=152)CAMDEX 2.1 Year 3 (n=463) CAMDEX 2.2 Year 5 (n=300) Survey 3 Year 7 (n=713) Survey 4 Year 10 (n=446) Survey 5 Year 13 (n=233) 1985 CC75C Study CAMDEX 3.1 Year 8 (n=125) 1987 1988 1990 1992 1993 1995 1998 2002 Survey 7 Year 21 (n=44) 2006 Year 0 Year 2 Year 3 Year 5 Year 7 Year 8 Year 10 Year 13 Year 17 Year 21 2008 2010 Year 23 Year 25 Survey 6 Year 17 (n=110) Survey 8 Year 23 (n=11) Survey 9 Year 25 (n=7)

5. Origins of the study Before the study began in the 1980s even the prevalence of dementia in the UK was unknown Baseline cross-sectional survey was screening for an intervention study Hughes Hall Project for Later Life Fleming J, Zhao E, O’Connor DW, Pollitt PA, Brayne, C, the CC75C study. Cohort profile: The Cambridge City over 75’s Cohort (CC75C). International Journal of Epidemiology 2007; 36(1):40-46

6. Cognition in the CC75C population aged ≥75 All CC75C surveys included the Mini-Mental State Examination (Folstein et al 1975) Devised to detect cognitive impairment, testing 7 domains: -Orientation to time and place- Registration- Recall -Attention and Calculation- Language- Praxis -Complex commands

7. Dementia shortens survival Fleming J et al (2006) Population levels of mild cognitive impairment in England and Wales. In: Tuokko, HA and Hultsch, DF (Eds) Mild cognitive impairment: International perspectives. Psychology Press - CC75C study data extracted from: O'Connor D.W. et al (1991). A year after initial diagnosis mortality was high 25% of those with minimal dementia had died 50% of those with severe dementia had died

8. Functional and cognitive disability Zhao et al, JAGS 2010 Jan;58(1):1-11. Transitions & place of death +/- dementia Support loneliness and well-being Self-rated health ( In submission) The last year of life aged ≥85

9. Place of death for the ‘oldest old’ Only a small minority (7%) of very old people aged 85+ changed address in their last year BUT… over half (52%) did not die at their usual address. Fleming et al, British Journal of General Practice 2010 Apr;60(573):171-9.

10. No dementia (n=34/142) Minimal/ Mild dementia (n=37/142) Moderate/ Severe dementia (n=71/142) Usual address at death Place of death

11. CC75C QoL at the end of life study - qualitative Topic-guided interviews Study participants Relative/friend/carer most closely involved Topics subjective experience of being very old attitudes towards medical and social care preferences, attitudes and concerns regarding very late life and death

12. Example theme – thinking about the future Attitudes & preferences regarding the future …regarding living in advanced old age Outlook on remaining life Longevity …regarding end of life care, dying and death Outlook on dying and death End of life care preferences »who delivers EoL care / familiarity / continuity »place of care / place of death »‘life-saving treatment’ vs ‘being made comfortable’ »communicating preferences

13. Moving to a new place of care I should have moved here years ago. 98-yr-old woman, moved to sheltered housing (fall). I think that in a way I shouldn’t have moved so quickly. No, because you aren’t.. when you’re not well.. You see your doc.. People take slight advantage of you don’t they, really? 98-year-old woman, nursing home (hip fracture, dementia). Needless to say I didn ’ t want to give up my independence, which to a certain extent you’ve got to[..] Then I realised, for my family’s sake, give them piece of mind, it would be the wisest thing to do. 98-year-old woman, moved into care (short-term memory loss).

14. CC75C study of falls over 90 years old Severe cognitive impairment was the only factor associated with length of time on the floor after a fall, OR 5.9 (95% CI 1.9-18.5) Falls reported during follow-up: n=66 (60%) fell during the year following interview… n=265 falls 3/4 of those who fell were reported to have fallen more than once 4/5 of falls happened alone, in 2/3 of these unable to get up Inability to get up after falling, subsequent time on floor, and summoning help: prospective cohort study in people over 90. Jane Fleming, Carol Brayne, and the Cambridge City over-75s Cohort (CC75C) Study collaboration. BMJ 2008;337:a2227.

15. Neuropathology relative to falls: +/- dementia Amongst people without dementia: – Most examined neuropathological features ↑ across falling groups ( ↑ from 0  1  2+ fall reports ) especially - white matter pallor - microscopic atherosclerosis - micro-infarcts Amongst people with dementia: – Overall burden of pathology was greater, but only micro-infarcts showed a similar ↑ across falling groups ( ↑ from 0  1  2+ fall reports )

16. White matter lesions by falling status +/- dementia Dementia No dementia K Richardson, S Hunter et al, Neuropathological correlates of falling in the CC75C population-based sample of the older old Current Alzheimer’s Research ( in press 2011 )

17. Neuropathology relative to clinical dementia Alzheimer-type and cerebrovascular pathology are both common in the very old. A greater burden of these pathologies, Lewy bodies, and hippocampal atrophy, are associated with a higher risk of, but do not define, clinical dementia in old age. C Brayne et al, Journal of Alzheimer’s Disease 18 (2009) 645–658

18. Collaboration betwn the 3 European studies with population-based brain donor collections MRC - CFAS (65+) CC75C (75+) Vantaa (85+) Data harmonisation for collaborative analyses relating to neuropathology prevalence in the general population and dementia genetics ‘brain reserve’ factors, e.g. education, social networks behavioural and psychological symptoms of dementia (BPSD) healthy ageing

19. Education, the brain and dementia: neuroprotection or compensation? EClipSE Collaborative Members Brain 2010: 133; 2210–2216; doi:10.1093/brain/awq185

22. Ways to collaborate with the CC75C study We welcome approaches for collaboration etc Recent/current examples include… PhD students (internal and external): - delirium and subsequent cognitive trajectories - service contact after dementia diagnosis - behavioural and psychological symptoms - back pain in old age – effect of cognition on reporting pain Masters/medical student/undergrad placements: - self-reported disability and observed function - predictors of a ‘good death’ in very old age - loneliness, social activity and cognitive function Visiting researchers: - outcomes predicted by functional performance measures - developing cross-cultural comparative research (China)

23. Acknowledgements We are grateful for current, recent and not so recent funding from the National Institute of Health Research Cambridgeshire and Peterborough Collaboration for Leadership in Applied Health Research and Care, the BUPA Foundation, NHS Executive Eastern Region, the Medical Research Council and many more – see full list of funders on the study website: http://www.cc75c.group.cam.ac.uk/grants Current investigators: Stephen BarclayMorag FarquharEugene Paykel Carol Brayne Jane FlemingElizabeta Mukaetova- Tom DeningFelicia Huppert Ladinska – see full list of past and present investigators and staff: http://www.cc75c.group.cam.ac.uk/personnel With tremendous thanks to all the study participants, their relatives, carers, care homes and general practices without whom none of this research would have been possible.

24. Ways to get involved with CC75C and beyond We welcome approaches for involvement from anyone with an interest: - older people and anyone caring for an older person - anyone working with older people - anyone planning services or preparing policies that will affect older people and their carers Ways to become involved include: - ideas for sharing research findings as widely as possible - commenting on draft reports from stakeholder perspectives - contributing to planning and subsequent stages of potential new research projects arising from the results, e.g. ▪ exercise programmes for people with dementia and carers ▪ planning palliative care for hip fracture patients with dementia