Dementia research: knowledge into care

Carol BrayneDirectorInstitute of Public Health

On behalf of CC75C and CFAS groups

Numerators

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

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

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?

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

What have we been working on in this area for last 25 years?

• Two major studies + others

• CC75C

• CFAS

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

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

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

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

0

50

100

150

200

250

300

65-69 70-74 75-79 80-84 85-89 90+

age group

n/10

00 p

yar

Rate/1000 pyar

Response profiles as a function of dropout and death

20

22

24

26

28M

ean

MM

SE

0 2 4 6 8 10Time

All interviewsDeath after year 6Refusal after year 6

Death after year 2Refusal after year 2Death after year 0

Refusal after year 0

TRANSFERS IN PLACE OF RESIDENCE OR CARE AT THE END OF LIFE Place of residence when last surveyed in the year before death

Usual address at death Place of death

Community n=166 (52%)

Sheltered housing n=53 (17%)

Residential care home n=68 (21%)

Care home with nursing n=20 (6%)

Hospital: NHS long-stay n=13 (4%)

Community n=161 (50%)

Sheltered housing n=47 (15%)

Residential care home n=71 (22%)

Care home with nursing n=30 (9%)

Hospital: NHS long-stay n=11 (3%)

160 46 63 1 3 20 10 2 2 1

4 4 1 2 1

Community n=52 (16%)

Sheltered housing n=9 (3%)

Residential care home n=62 (19%)

Care home with nursing n=29 (9%)

Hospital: NHS long-stay

General Psychiatric n=29 n=3

All long-stay n=32 (10%)

Hospital: acute

NHS Private n=128 n=2

Acute n=130 (41%)

Hospice n=6 (2%)

52 7 2 1 15

4 2

5 30 16 3 1 11

81

26 55 9

MRC Cognitive Function and Ageing MRC Cognitive Function and Ageing Study Study

(www.cfas.ac.uk)(www.cfas.ac.uk)

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

MRC CFAS

S0 Prevalence ScreenN= 13004

S2 Incidence ScreenN= 7176

A0 Prevalence AssessmentN= 2640

F1 Annual Follow-upN= 920

C2 Combined Screen/AssessN= 1651

A2 Combined Screen/AssessN= 1463 F3 Annual Follow-up

N= 590

C6 Combined Screen/AssessN= 1736

C8 Combined Screen/AssessN= 390

C10 Combined Screen/AssessN= 3145

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

THE MRC CFAS STUDY DESIGN

1991

Prevalence by centre

0

2

4

6

8

10

12

14

Camb Gw yn New c Nott Oxfd Camb Gw yn New c Nott Oxfd

Pre

vale

nce

(%

)

Men Women

Adapted from MRC CFAS 1998

Percentage below MMSE cutpoints by age

0

10

20

30

40

50

60

70

80

65-69 70-74 75-79 80-84 85-89 90+

17/18

21/22

24/25

%

Age group

Clinical norms

90th

75th

50th

25th

10th

0

5

10

15

20

25

30

MM

SE

65 70 75 80 85 90 95Age in years

% of Population

65-74 75+men women men women

head injury 718 8 8

HBP 3432 37 25

angina 1416 10 16

heart attack 915 6 14

stroke 86 4 11

diabetes 6 5 8 6

Prevalence of reported vascular and other risk factors

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

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

Clinic Based OutcomePopulation Based Outcome

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.

Estimated Dementia distribution for people over 65 years old in 2050

Source: ONS Statistics. Dementia UK full report 2007.

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

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 relativesdisability

depression the “oldest old” attitudes to dying

- neuropathological investigationsInternational Journal of Epidemiology cohort profile (2007)

http://www.cc75c.group.cam.ac.uk

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