Harnessing the power of cohort studies for dementia research
| Published date | 16 March 2015 |
| Pages | 8-17 |
| DOI | https://doi.org/10.1108/JPMH-05-2014-0019 |
| Date | 16 March 2015 |
| Author | Elizabeth Breeze,Nicola Jean Hart,Dag Aarsland,Catherine Moody,Carol Brayne |
| Subject Matter | Health & social care,Mental health,Public mental health |
Harnessing the power of cohort studies
for dementia research
Elizabeth Breeze, Nicola Jean Hart, Dag Aarsland, Catherine Moody and Carol Brayne
Dr Elizabeth Breeze is
Volunteer and Nicola Jean Hart
is Project Officer, both at the
Alzheimer’s Society UK,
London, UK.
Professor Dag Aarsland is
based at Centre for Alzheimer
Research, Karolinska Institutet,
Sweden.
Dr Catherine Moody is
Research Programme Manager
at the UK Medical Research
Council on behalf of JPND,
London, UK.
Carol Brayne is based at
Cambridge Institute of Public
Health, University of
Cambridge, Cambridge, UK.
Abstract
Purpose –The purpose of this paper is to scope potential and gaps in European cohort studies with focus
on brain ageing and neurodegeneration.
Design/methodology/approach –Combined and augmented two scoping exercises conducted for
European Union Joint Programme on Neurodegenerative Diseases (JPND) and the Alzheimer Society UK.
Findings –In total, 106 cohorts initially identified with a further 52 found on second sweep. Strengths include
gender balance, diversity of measures and much detail on health and health behaviours, and lifecourse
representation. Major gaps identified were the oldest old, non-Caucasians, people in Eastern Europe,
migrant populations, rural residents and people in long-term care. Quality of life, psychosocial and
environmental factors were limited. Relatively few cohorts are population representative. Analytical methods
for combining studies and longitudinal analysis require careful consideration.
Research limitations/implications –European studies and published information only.
Practical implications –Collaboration across disciplines and studies, greater dissemination of methods
and findings will improve knowledge about cognitive and functional decline in current and future older
populations.
Social implications –Better understanding of brain ageing and the dementia syndrome will improve
investment decisions for primary, secondary and tertiary prevention.
Originality/value –Building on the work of JPND and the Alzheimer Society is the first study of the scope
and limitations of current cohorts in Europe. It is designed to help researchers and policy makers in their
planning.
Keywords Europe, Dementia, Cohort studies, Longitudinal studies
Paper type General review
Introduction
The rise of neurodegenerative disorders (NDGs) consequent on global population ageing is
receiving attention from international organisations such as WHO and UN, with considerable
estimated costs spurring calls for both policy recognition and increased research to support
evidence-based policy development (World Health Organization and Alzheimer’s Disease
International, 2012). In Europe around 7.2 million people might meet criteria for the dementia
syndrome (Wimo, 2009), the most common of the NDGs. The European Union Joint Programme
on Neurodegenerative Disorders (JPND) held a series of working groups in 2011 to discuss the
most valuable shape of future calls for research and is taking this forward through more working
groups to inform cohort studies in neurodegenerative disease research.
While case-control studies were formerly a major source of evidence on aetiology cohort studies,
with fewer disadvantages, became the major source of observational evidence for common
NDGs. This includes genetic factors, early-, mid- and later-life factors. In the last quarter of the
last century many studies on dementia were initiated, several comprising the European grouping
EURODEM (Alzheimer Europe, 2009), which provided robust prevalence and incidence
estimates for dementia, including that noted in the introduction above increased understanding
Received 5 May 2014
Revised 27 August 2014
Accepted 9 November 2014
Declarationof interest: Dr Elizabeth
Breeze has workedon the English
LongitudinalStudy of Ageing and
have becomefamiliar with some
cohorts whileworking on health and
ageing and this may be reflected in
the information the authorshave
picked out forthis report.
The authors a re grateful to the
JPND ActionGroup on Longitudinal
Studies andJames Pickett of the
Alzheimer’sSociety for allowinguse
of their cohortlistings and to Derick
Mitchellfor his comments on a
draft. Alsoto all those who directly
or indirectlycontributed information
to the information used here,
includingJavier Almazan, Enrique
Alcalde,David Burn, Enrica
Cavedio, Te ddy Cosco, Joanne
Feeney and Giovanni Frisoni.
PAG E 8
j
JOURNAL OF PUBLIC MENTAL HEALTH
j
VOL. 14 NO. 1 2015, pp. 8-17, © Emerald Group Publishing Limited, ISSN 1746-5729 DOI 10.1108/JPMH-05-2014-0019
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