Dementia Care

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Vol 5 No 5 October/November 2016 Australian Journal of Dementia Care 35
Where to now?
Substantial funding is required to
establish and maintain a National
Dementia Registry inAustralia. There is a
business case that the return on
investment would be positive. The
registry could be hosted at a university or
another institution with relevant
expertise.
The DCRC: ABC will publish a report
by the end of this year on dementia
registries internationally, in conjunction
withAlzheimer’s Disease International
and The Global CEO Initiative on
Alzheimer’s Disease (a group linked to
the World Council of Dementia). A
summary academic paper is also planned
for publication later this year.
While the DCRCs have achievedmuch
in 10 years, a great deal more can be
achieved in the next decade with the
support of a National Dementia Registry.
Acknowledgments
The project described in this article – A Scoping
Project for a National Dementia Registry in
Australia – was funded by the DCRC: ABC,
UNSW Australia, with financial support from
Alzheimer’s Disease International and The Global
CEO Initiative on Alzheimer’s Disease (CEOi).
References
Alzheimer’s Australia (2013) Collaborating for a
better future for Australians living with Alzheimer’s
disease. Outcomes from a multidisciplinary
roundtable discussion. Hobart, Tasmania, 14
May 2013. Available at:
Australian Institute of Health and Welfare (2014)
Improving dementia data in Australia:
supplement to Dementia in Australia 2012. Cat
no AGE 76. Canberra: AIHW.
Leach J, Levy R (1993) Dementia case registers.
International Journal of Geriatric Psychiatry 8(3)
197-201.
Religa D et al (2015) SveDem, the Swedish
Dementia Registry: a tool for improving the
quality of diagnostics, treatment and care of
dementia patients in clinical practice. PloS one
10(2) e0116538.
Wilkins S, Best RL, Evans SM (2015) Need for a
roadmap for development of a coordinated
national registry program. Internal Medicine
Journal 45(11) 1189-1192.
Dr Karolina Krysinska is a Research Fellow in
the School of Psychiatry/Dementia Collaborative
Research Centre: Assessment and Better Care
(DCRC: ABC), UNSW Australia; Professor
Perminder Sachdev is a DCRC: ABC Chief
Investigator, Co-Director of the Centre for Healthy
Brain Ageing (CHeBA) UNSW and Clinical
Director of the Neuropsychiatric Institute (NPI),
Prince of Wales Hospital, Sydney; Professor
Henry Brodaty is DCRC: ABC Director, Co-
Director of CHeBA, Scientia Professor of Ageing
and Mental Health, UNSW Australia and
Consultant Psychogeriatrician Aged Care
Psychiatry and head of the Memory Disorders
Clinic, Prince of Wales Hospital. To follow up on
this article contact Karolina at:
.
The foundations of the INSPIRED
Study began in 2007 after I was
fortunate enough to not only be
offered a three-year postdoctoral
fellowship at the Dementia Collaborative
Research Centre: Assessment and Better
Care (DCRC: ABC) at UNSWAustralia, but
also afforded the opportunity to choose my
research focus.
I had observed that more people
younger than 65 seemed to be presenting
with cognitive complaints to our Academic
Department of OldAge Psychiatry at
Prince of Wales Hospital, Sydney. Professor
Brian Draper agreed to partner with me to
investigate this further. When we started to
research young onset* dementia (an onset
of symptoms under the age of 65; at that
time also known as presenile dementia or
early onset dementia), it soon became
evident that there was very little known
about this group. Further, people under the
age of 65 were not really factored into
calculations about the need for dementia
services as there was an assumption that
that this population was so small as to be
inconsequential. Often they fell into the
gap between disability and aged care
services.
The INSPIRED Study (Improving
Service Provision for Early Onset
Dementia) was thus born out of the desire
to establish howmany people had young
onset dementia inAustralia so that a
robust, evidence-based argument could be
made to establish adequate services for this
group.
Prevalence in Australia
Dementia in young people is more
common than most people think. Our
prevalence study, funded by an
Alzheimer’s Australia Research grant,
indicated that approximately one in every
750 people aged 45-64 are diagnosed with
young onset dementia. Additionally
some people are very young at the onset
of their dementia symptoms; in
particular, five people in our study were
aged less than 40 years at the time of the
study. Overall, it is currently estimated
that there are 25,000 Australians with
young onset dementia, accounting for 8%
of all dementia cases; certainly not an
insignificant group.
More clinically diverse
Young onset dementia is much more
clinically diverse than dementia in older
people, so you are more likely to see a
greater range of dementias and also rarer
causes of dementia.
Some dementias tend to have an earlier
age of onset, such as frontotemporal
dementia, and are seen more often in this
group. There are also more people with
autosomal dominant, or genetically
inherited, dementias although the rate is
still only around 15-20% of young onset
cases. This means that the majority of
dementias in younger people are not
inherited but are instead primarily due to
environmental, lifestyle and/or other (as
yet unknown) risk factors.
Within diagnostic groups, such as
Alzheimer’s disease, there does not seem
to be great differences between young and
older people with the condition. In fact,
whenAloisAlzheimer first described the
neurodegenerative illness that would later
be named for him, he believed it to be a
‘presenile’ condition; his first patient had
an onset of symptoms in her forties and the
second in his fifties.
Importantly there are a number of young
onset dementias with potentially
preventable causes, such as dementia
secondary to alcohol abuse and/or head
injury.
Unexpected hurdles
We did not expect the significant level of
stigma regarding the term ‘dementia’. This
initially created a barrier to some groups
participating in our study and caused us to
rethink our terminology. We eventually
used the term ‘young onset memory and
related disorders’ and people seemed
happy to endorse this.
We also learnt that people assisting with
DCRC SPEC I AL I SSUE : THE B I G P I CTURE I N DEMENT I A RESEARCH
Inspiring action: Australian
team at forefront of young
onset dementia research
Australia’s INSPIRED Study is leading young onset dementia research
internationally, with the aim of improving services and support for this
previously under-researched group. Adrienne Withall explains
* Footnote: The International Psychogeriatric Association Young Onset Dementia Shared Interest Forum uses the term
'young onset dementia' in preference to 'younger onset dementia' and is striving to make this the international convention.