Dementia Care

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Vol 5 No 5 October/November 2016 Australian Journal of Dementia Care 33
The data we have about people with
dementia and their carers inAustralia
are based on information collected in
general population surveys, longitudinal
studies, administrative datasets (such as
hospital use), and the integration of
different data sources (called ‘data
linkage’). This information helps
clinicians and other health and aged care
professionals to better identify, treat and
care for people with dementia, and
support their carers and family members.
However, the sources of this
information are often inconsistent in
terms of the data that are collected and
definitions used. This makes it difficult to
accurately estimate the prevalence of
dementia and the use of health and aged
care services by people with different
types of dementia and from diverse needs
groups (AIHW 2014).
One proposed solution is to establish a
clinical registry of dementia inAustralia.
Clinical registries are databases collecting
information about people diagnosed with
a particular disease, who use a particular
health resource or undergo a particular
procedure.
Registries are important tools for
monitoring quality and appropriateness
of care, measuring the impact of disease
and treatments, including quality of life,
and estimating cost-effectiveness of
treatments in real-world medical practice.
Registries also support recruitment for
research studies.
The number of clinical registries
operating inAustralia has been
increasing, and these registries inform
clinical practice in many fields (Wilkins et
al 2015). There are currently more than 30
such registries – including national
registries on renal dialysis, joint
replacement and kidney transplant.
Why Australia needs
a dementia registry
Evidence from other countries shows that
dementia registries can be valuable tools
for aged care and health planners, policy
makers and researchers in providing
much-needed consistent information on
diagnosis, treatment and management of
dementia.
The need for a National Dementia
Registry inAustralia was emphasised at
the Alzheimer’s Australia
Multidisciplinary Roundtable Discussion
in Hobart, Tasmania in May 2013.
Researchers, clinicians, policy makers and
carers, in their call for action, concluded
that such a registry is “a means of
ensuring that recommended therapies
and services are logged and followed up
from the point of diagnosis and to
enhance research” (Alzheimer’s Australia
2013 p16).
ANational Dementia Registry in
Australia could provide quality data
about the natural history and outcomes of
dementia as well as being a valuable
source of data on the quality of
assessment, diagnosis and management
of dementia.
The report from the 2013 roundtable
suggested that newly diagnosed people
could opt-in (on a voluntary basis) to a
National Dementia Registry. This registry
would link individuals with dementia
and their carers to appropriate services
available in their area and to potential
participation in research, helping to
ensure a clear pathway for diagnosis and
follow-up.
The report also said the registry would
enable approved healthcare professionals
to reviewwhether people with dementia
DCRC SPEC I AL I SSUE : THE B I G P I CTURE I N DEMENT I A RESEARCH
Early Career Spotlight: Dr Moyra Mortby
The Dementia Collaborative Research Centres (DCRCs) have a strong
tradition of building early career researchers, and helping young
scientists discover and apply new knowledge in Australian dementia
care. This includes recruiting international talent.
In 2011 Dr Moyra Mortby (pictured) came to Australia from the
University of Zurich to join the DCRC team at the Centre for Research
on Ageing, Health and Wellbeing at the Australian National University
(ANU) in Canberra. Her early work involved brain imaging and risk
factors for brain ageing outcomes. Working on projects in early
diagnosis and prevention, Moyra explored the use of normative
structural imaging databases to assess brain ageing across the adult
lifespan.
Since starting in Australia with the DCRCs, Moyra has driven the
development of a research program on dementia and behavioural and
psychological symptoms of dementia (BPSD). She leads a number of
research projects investigating BPSD in dementia and pre-clinical states
of dementia, both in community-based and residential care settings.
Gaining recognition
Gaining recognition as an independent researcher, Moyra has received
a fellowship from the Alzheimer’s Australia Dementia Research
Foundation in 2013 and the Alzheimer’s Australia Dementia Research
Foundation Hazel Hawke Research Grant in Dementia Care. She is also
the recipient of the 2015 New Investigator Award by the International
Society to Advance Alzheimer’s Research and
Treatment (ISTAART) and the Neuropsychiatric
Syndromes in Neurodegenerative Diseases
Professional Interest Area.
Moyra is also one of 76 early career researchers from around Australia
to have been awarded an NHMRC-ARC Dementia Research
Development Fellowship in 2015. This fellowship funds a four-year
project (BPSD-CARE) which is aimed at reducing the prevalence of
BPSD and medication used to manage BPSD in Australian residential
aged care facilities. The program will equip residential aged care staff
with specialised training and skills needed to provide care proactively
for all residents with BPSD and improve quality of life for residents,
carers and relatives.
The BPSD-CARE program
The BPSD-CARE programadapts a Swedish programwhich has been
implemented since 2010, and was developed to help ensure and
improve residential care for people with BPSD, reduce BPSD
prevalence and improve quality of life for people with BPSD. The
Swedish program has shown promising evidence of efficacy, and will
now be adapted and evaluated by Moyra for use in Australia.
Outcomes from this project will help inform the aged and healthcare
systems to deal more effectively and efficiently with the rising number of
individuals with dementia and BPSD.
The case for a National Dementia Registry in Australia
The need for a clinical registry to collect data on dementia in Australia was raised publicly in 2013.
Karolina Krysinska, Perminder Sachdev and Henry Brodaty explain the benefits and outline their
progress in developing the first stage of a National Dementia Registry in Australia