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34 Australian Journal of Dementia Care October/November 2016 Vol 5 No 5
had accessed a particular service. This
information could be used to remind
‘non-users’ of the services about
availability and potential benefits.
Information on currently available
treatments, clinical trials as well as
discontinued drugs could also be
included. The registry could be linked to
electronically-controlled personal health
records (Alzheimer’s Australia 2013).
Planning for an Australian registry
In late 2015 our team from the Dementia
Collaborative Research Centre: Assessment
and Better Care (DCRC: ABC), at UNSW
Australia, began a scoping project to
design and develop the first stage of a
National Dementia Registry inAustralia.
The registry would provide
performance feedback for dementia
services and clinicians and supplement
research data with information about
routine diagnosis, treatment and care of
people with dementia in health and aged
care services. It would also help to
identify people with dementia and their
carers who are interested in participating
in research studies, including clinical trials
of pharmacological interventions.
The scoping study involved reviewing
the literature, liaising with other registries
inAustralia and internationally and
establishing and maintaining
relationships with future registry
stakeholders.
The results of that project are presented
here, along with some of the steps that will
be taken to progress the proposed registry.
It is our belief that a case can be made to
the National Health and Medical Research
Council (NHMRC) National Institute for
Dementia Research (NNIDR) and
philanthropic organisations for funding to
set up a dementia registry inAustralia.
Dementia registries worldwide
Dementia-specific registries are operating
in many countries in Europe, the
Americas andAsia. Some of the registries
collect data at the national level (eg
France, Sweden, US) while others collect
data on dementia in a particular region or
part of the country (eg Denmark, Italy,
Spain). In some countries (eg India, Japan,
Pakistan) there are local hospital-based
registries. There are also international
initiatives, such as the European
Prevention of Alzheimer’s Dementia
(EPAD) registry.
These dementia registries all have
differences in design, operation,
recruitment, number of registered people
and funding sources, reflecting their
varying aims and functions (Leach & Levy
1993). However, in general, dementia
registries:
• Collect information on the
epidemiology of dementia and its
different types.
• Provide insight into the aetiology and
natural history of dementia.
• Help evaluate and refine the diagnostic
criteria and tests.
• Collect information on use of health and
aged care services and carer support.
• Inform planning and future
development of services.
• Help to identify people willing to be
involved in research studies and clinical
trials.
• Support dementia education of health
and aged care personnel.
Three dementia registries are described
belowwhich show the range of
applications of databases collecting
information about people with dementia
and their carers.
SveDem (Sweden)
The Swedish Dementia Registry
(SveDem) ) includes
people newly diagnosed with dementia in
specialist care, primary care units or aged
care homes (see box above). The registry
was established in 2007 and is one of over
100 in Sweden which monitor quality of
care (Religa et al 2015).
SveDem aims to improve the quality of
diagnosis, treatment and care of people
with dementia. It is an online registry,
collecting information about diagnosis,
medical treatment and community
support. These indicators can be followed
over time.
In March 2016, almost 60,000 people
with dementia were registered in SveDem
and more than 40,000 were followed-up.
The database covers almost the entire
country; all memory clinics in Sweden
provide data to the registry.
Registry data inform further
development of the national guidelines
for dementia, enable monitoring of
quality of care and help to generate new
research hypotheses.
European Prevention of Alzheimer’s
Dementia Registry
The European Prevention of Alzheimer’s
Dementia (EPAD) project (http://ep-
is a major initiative, which
involves more than 30 universities,
consumer organisations and commercial
partners throughout Europe and the UK.
The EPAD project began in 2015 to
create a novel environment for testing
interventions to prevent Alzheimer’s
dementia. It draws on existing national
and regional registers of people at risk of
developing Alzheimer’s dementia in
order to create an EPAD register of 24,000
at-risk individuals. These people will be
screened and 6000 participants at
greatest risk of Alzheimer’s dementia
will be selected and invited to join an
EPAD longitudinal cohort study. Finally,
1500 participants from the EPAD cohort
will take part in innovative clinical trials
of drugs designed to prevent
Alzheimer’s dementia. The project is
ongoing.
Join Dementia Research (UK)
Join Dementia Research (JDR)
is
a service which allows people with
dementia, their carers, and anyone over
the age of 18 with and without dementia,
to register their interest in participating in
dementia research and to be matched to
suitable studies.
The JDR research volunteer register was
launched in 2015 in the UK by the
National Institute for Health Research in
partnership withAlzheimer Scotland,
Alzheimer’s Research UK and
Alzheimer’s Society.
The key objective of the JDR initiative is
to increase the number of people with
dementia and their carers and other
interested people involved in dementia
research. The service is available
nationwide. In September 2016 there were
more than 22,500 volunteers on the JDR,
of whom almost 5500 were enrolled in 76
dementia studies.
DCRC SPEC I AL I SSUE : THE B I G P I CTURE I N DEMENT I A RESEARCH
Sweden’s dementia registry: practical outcomes
SveDem was established primarily as a registry to monitor and improve the diagnosis,
treatment and care of people with dementia in Sweden. It also offers many opportunities
for research. Recent studies based on the registry data show that:
• Physicians’ assessment of driving fitness in dementia needs improvement; in almost
20% of people with dementia, Swedish physicians did not address the issue of driving.
• Dementia diagnosis differs in men and women and depends on age and severity of cognitive
impairment; the diagnostic procedure for dementia is more extensive for younger than for
older people, as the diagnostic possibilities are greater in younger people with dementia.
• The registry offers valuable information on the costs of diagnostic procedures for dementia
in daily clinical practice; diagnostic costs are higher in younger people with dementia.