Dementia Research: The MRC Cognitive Functioning and Ageing Study (CFAS) -Brayne
Submitting InstitutionUniversity of Cambridge
Unit of AssessmentPublic Health, Health Services and Primary Care
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Clinical Sciences, Neurosciences, Public Health and Health Services
Summary of the impact
Research by Professor Carol Brayne, has led to increased understanding
and awareness of dementia as a key public health issue of our time.
Outcomes of her DH/MRC funded longitudinal Cognitive Function and Ageing
Studies (CFAS) have contributed to national and international health
policy on dementia as well as public debate.
Specifically, the CFAS study provided evidence that was used in the
highly influential report "Dementia UK" which led to the development of
the 2009 National Dementia Strategy. Results from CFAS have increased
healthcare workers' understanding of the condition, such as the complexity
of cognitive impairment and the relationship between illness and
Research setting: Since 1999, this multicentre longitudinal study
has been led by Professor Brayne in the Department of Public Health and
Primary Care (tenure since 1991).
Research group: Professor Brayne leads the CFAS research group
with national and international collaborators. The support of the MRC
Biostatistics Unit has been pivotal in providing rigorous statistical and
innovative methodology to support the diverse outputs from CFAS (>220
peer reviewed publications to date).
Study rationale, and underpinning data and methodsM: Prior to
CFAS, there was limited representative evidence on the incidence and
prevalence of dementia in the UK population. In CFAS, survey methods have
measured prevalence and incidence of dementia in the UK population, and
have been applied to generate population representative findings for
detailed neuropathology and molecular analyses. CFAS is a longitudinal
study, with 18,000 subjects recruited at baseline in 1989/1991, and new
generation studies (CFAS II) and CFAS Wales) which began in 2008 to test
differences in prevalence across the two decades. CFAS I subjects have
been surveyed at least three times since initial interview (in 1994, 1997
and 2001) and in CFAS II at two years, with continued follow up of those
from CFAS I consenting to brain donation. To date, 47,000 interviews have
taken place using standardised assessment for health, dementia, and
measures of health and social care services utilisation. There are
currently more than 560 brain donations from study participants.
Key findings and outcomes of the research include the following:
- Dementia prevalence. Before CFAS there were no population
figures which could be confidently applied nationally and to specific
geographical areas. CFAS showed that dementia is common, more prevalent
than previously thought (overall prevalence of dementia in the 65+
population, 6.6%), and increases as the population ages (prevalence in
the 85-89 population, 25.3%). Differences were tested across six sites,
enabling estimates to be made for different parts of the UK as well as
for the institutional care population. (Section 3. Research ref 1 and 3)
- Care utilisation and cost. The study demonstrated the high
cost of informal care in supporting people with dementia, which was much
greater than previously estimated. The group was also able to predict
future demand for long term care and likely associated costs. Modelling
long term care needs and forecasting costs have been invaluable tools
for policy makers. (Research ref 4)
- Better understanding of neuropathology of dementia/demonstrating
complexity of cognitive decline (research refs 2 & 5). CFAS
has been a major contributor (first brain donated in 1993) to a unique
population representative brain resource, available to deepen our
understanding of the neuropathological determinants of dementia.
Insights from a unique sample of donated brains show no clear thresholds
of Alzheimer-type and vascular pathology that predicted dementia status,
challenging conventional dementia diagnostic criteria.
- Features associated with a higher or lower risk of developing
dementia. CFAS demonstrated a relationship between demographic and
lifestyle factors and risk of cognitive impairment, including age,
stroke and Parkinson's disease, and the protective effect of higher
education and of self-reported `good' or `excellent' health. (research
ref 5 and 6)
References to the research
1. Cognitive function and dementia in six areas of England and
Wales: the distribution of MMSE and Prevalence of GMS organicity level in
the MRC CFA Study. MRC CFAS. Psychological Medicine 28(2):319-335
2. Pathological correlates of late-onset dementia in a
multicentre, community-based population in England and Wales. Esiri M;
Matthews FE; Brayne C; Ince PG; Neuropathology Group. MRC/CFAS. Lancet
3. Dementia before death in ageing societies - The promise of
prevention and the reality. Brayne C; Gao L; Dewey M; Matthews FE; MRC
CFAS. PLoS Medicine 3(10):1922-1930 (2006).
4. Cognitive impairment in older people: future demand for
long-term care services and the associated costs. Comas-Herrera A,
Wittenberg R, Pickard L, and Knapp M. International Journal of
Geriatric Psychiatry 22(10):1037-1045 (2007)
5. Age, neuropathology and dementia. Savva G, Wharton S, Ince P,
Forser G, Matthews F, Brayne C. For the MRC CFAS. N Eng J Med
6. Risk factors for incident dementia in England and Wales: The
Medical Research Council Cognitive Function and Ageing Study. A
population-based nested case-control study. Yip A; Brayne C; Matthews FE.
Age and Ageing 35: 154-160 (2006);
Grants which supported CFAS:
CFAS I: MRC G9901400 (ended 2012) CFAS renewal grant £836,100 2005-2011
CFAS II: MRC G0601022 - £2,014,172 (2008-2013)
Subcontract to Cambridge University to provide the administrative support
to Bangor University
(CFAS Wales) : ESRC 2010-2015 RG60916 - £404,627.88
Sheffield (Neuropathology): RG57915 - £256,237.00 (the Cambridge part of
the main grant) 01/02/2010 - 31/01/2014
In addition, the Brain Banking for MRC CFAS is supported in part by
grants for the Newcastle and Cambridge NIHR Biomedical Research Centres.
Details of the impact
The impact of CFAS on policy, service and society can be seen widely,
e.g. through citations in policy documents, clinical guidance and the
quoting of findings in public discourse.
Epidemiology of dementia
- CFAS provided the core prevalence estimates for dementia in the UK
population in Dementia UK (2007), e.g. "In terms both of sample size
and scope the evidence base is dominated by the Medical Research
Council Cognitive Function and Ageing Study" (page 10, reference
1, section 5). These estimates remain those used nationally, though they
may in time be modified by Professor Brayne's most recent work which
includes a 20 year intergenerational comparison on prevalence in three
CFAS areas holding methods steady (Matthews et al Lancet. 2013 Jul 17)
- The Dementia UK report for the Alzheimer's Society was instrumental
in bringing the weight of CFAS evidence into the 2009 National Dementia
Strategy, e.g. "Key data for the UK as a whole include the following:
There are approximately 700,000 people with dementia; In just 30
years, the number of people with dementia is expected to double to 1.4
million; The national cost of dementia is about £17 billion per year...",
DoH (2009) Living well with Dementia: A National Dementia Strategy. p16.
(Figures from research ref 1). See section 5, nos 1 and 2.
- The UK End of Life Care Strategy 2008 used our institutional data
which showed Dementia clearly to be a core business of care homes. See
section 5, no 3.
- Increased investment in dementia research. The 2012 announcement of a
boost to funding for dementia research by the Secretary of State for
Health and the Prime Minister's progress report on his `dementia
challenge' November 2012, quoted the Dementia UK 2007 projected
prevalence figures, (research refs 1 and 3). See section 5 no 2.
- Professional guidelines were influenced by baseline data on the
ageing population over 65, e.g. Good Practice Guidance for
Commissioning Interventions for people with dementia (DH 2011).
(research refs 1, 3, 4) See section 5, no 11.
- Research findings also now underpin practical tools for strategic
planning and commissioning services. The CFAS prevalence data is the
driver of the 2012 Dementia Prevalence Calculator - a tool for
General Practices and Commissioners to better understand local dementia
prevalence in the community and care homes. (Research ref 1). See
section 5, no 10.
- Modelling of long term care and costs has made a significant
contribution to the debate around the funding of long term care for the
ageing population (research ref 4). The clear economic case made for
better supporting dementia patients and carers was picked up by the
Wanless social care review in 2006, ("The MRC CFAS data provides a
detailed breakdown of the level of demand that people with dementia
living outside institutions present to the social care system"
p166. Section 5, no 4) which fed a debate that continued into the Dilnot
Commission review (2011) and the 2012 White Paper on Social Care.
CFAS has also contributed additional knowledge (e.g. on risk factors,
disease progression, disability and recovery, depression, and
neuropathology), with the following impacts:
- New knowledge identifying the complexity of cognitive decline and
ageing (research refs 2 & 5) raised awareness of the need to better
understand risk, cumulative risk, and vascular risk: e.g. "mixed
pathology was the most common finding at autopsy in the brains of
older people" (MRC/CFAS) (section 5, no 8) This knowledge had an
important impact on the `pharma' view, influencing prevention work and
clinical trials that thereafter could no longer assume that any one drug
suits all dementia sufferers, and contributing to a new MRC call for a
Fresh Approach to Dementia.. (Section 5, no 8)
- Professor Brayne's research has directly influenced a NICE guideline
on dementia. (CG42: Supporting people with dementia and their carers' in
health and social care) Estimates based on the improved understanding of
neuropathology and dementia drove work for the 2009 NICE Final Appraisal
Determination on donepezil, galantamine, rivastigmine and memantine for
the treatment of Alzheimer's disease, which led to the amended
guideline. (NICE technology appraisal guidance 217. See Section 5, no 9)
- CFAS research outcomes are influencing policy beyond the UK, e.g.
findings on dementia sub-types have been incorporated into WHO policy
(Dementia: a public health priority. WHO and ADI, 2012. See section 5,
#6, p19), and a 2012 Research Review forming the foundation for
Ireland's developing National Dementia Strategy (see section 5, no 7,
- Public awareness and involvement in research has increased in a very
real sense - in the numbers of `CFAS brains' donated to its Bioresource,
as well as dissemination efforts to increase awareness of brain banking.
BBC News and The Culture Show covered an innovative exhibition in
London, 2011: `Mind Over Matter' was based on portraits and life stories
of donors from the Cambridge longitudinal studies. The Science Museum's
Dana centre held a parallel debate, with Professor Brayne presenting
aspects of the neuropathological research, on the ethics and practice of
brain donation for research. (section 5, no12).
Sources to corroborate the impact
- Dementia UK: the full report. A report to the Alzheimer's Society by
Kings College London and the London School of Economics (2007). This
report was instrumental in bringing the weight of CFAS evidence into the
2009 National Dementia Strategy, and consequently, current
implementation of policies on dementia.
- Living well with dementia: a National Dementia Strategy, DoH (2009).
Quotes both Dementia UK (pp16, 34, 77, 94) and analysis on long term
care costs which were grounded in CFAS data (p16).
- The EOLC Strategy. Promoting high quality care for all adults at the
end of life, DoH (2008).
- Wanless D et al (2006) Wanless social care review: securing good
care for older people, taking a long-term view. King's Fund,
London. CFAS data used in modelling predictions of disability, death and
need for long term care (p39, p165), prevalence of cognitive impairment
and combined disability in care homes, and in anticipating the level of
demand for social care and informal care (p166). This fed a debate on
provision of and funding for long term care that continued into the
Dilnot Commission review (2011) and the 2012 White Paper on Social Care.
- Deaths from Alzheimer's disease, dementia and senility in England.
National end of life Intelligence Network, (2010)
- Dementia: a public health priority. WHO and ADI 2012.
- Creating Excellence in dementia care: A research review for Ireland's
National Dementia Strategy, Cahill S, O'Shea O, Pierce M. (2012).
- NICE Final appraisal determination 2009. Donepezil, galantamine,
rivastigmine (review) and memantine for the treatment of Alzheimer's
disease (amended). (NICE technical report on the economic analyses
resulting from further analyses by the MRC Biostatistics Unit. Also the
mixed pathology findings (Research ref #2) were incorporated into NICE
Clinical Guidance (CG42) Dementia: Full Guideline.
- The Dementia Prevalence Calculator 2012 (depends on CFAS data
(Dementia UK 2007)):
(N.B. No data on usage of the tool currently exists).