Dementia Care

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This issue of AJDC celebrates the achievements of the Dementia Collaborative Research
Centres (DCRCs) and looks at what Australian dementia research might achieve in the
future. Central to that effort and achievements are people living with dementia, their
carers and families – ‘consumers’, for want of a better descriptor.
In 2004 I was thrust into the world of dementia when my husbandAlan was diagnosed
withAlzheimer’s disease aged 69. The disease progressed rapidly and he died in 2007. In
2010, I was approached by an old friend, Ron Sinclair, to join a group being established to
support and encourage consumers to be involved in dementia research: Alzheimer’s
Australia’s Consumer Dementia Research Network (CDRN).
With foresight, and an awareness of international trends to involve consumers in the
research process through a networked structure, the DCRCs contributed funds to
Alzheimer’s Australia to establish such a network here. The CDRNwas modelled on the
UKAlzheimer’s Society Research Network. The Alzheimer’s Society is a pioneer in public
involvement in dementia research. The philosophy is that people with dementia and their
carers make a unique and valuable contribution to research with their knowledge and
passion ensuring funding is allocated to projects that address their real needs and
concerns. Being part of a supported and supportive network is critical to success.
Thus the CDRN, supported by the DCRCs, began its work. CDRNmembers were
involved with the DCRCs on the Coordinating Committee, project teams and grant
selection panels, and through providing feedback on project proposals. Its work expanded
with an integral role in the NHMRC Cognitive Decline Partnership Centre (CDPC). More
recently, two CDRNmembers joined the NHMRC National Institute for Dementia
Research (NNIDR) as members of the Board (myself) and the Expert Advisory Panel
(Louise Heuzenroeder).
The dementia research landscape has changed considerably since the establishment of
the CDRN. The DCRCs and the CDPC are now under the umbrella of the NNIDR. We
have a unique opportunity, through the NNIDR, to embed consumer involvement in
Australian dementia research according to internationally- and nationally-recognised best
practice. This requires funding and commitment. Cancer Australia, in partnership with
Cancer Voices Australia, has developed a National Framework for Consumer
Involvement in Cancer Control. I urge the NNIDR to formally adopt or adapt the
principles in this framework to the dementia field. Further, we already have an effective
working model for consumer involvement in research within the CDPC with a Consumer
Enabling Sub-Unit led ably by Joan Jackman. This model could well be adapted by the
NNIDR to coordinate consumer involvement across all its activities.
Alzheimer’s Australia recently developed a new Consumer Engagement Policy and
essentially ceased support for the CDRN in favour of a newNational Dementia Consumer
Network not specifically focused on research involvement. While welcoming a wider-
reaching network to attract a range of consumers and spread the workload, I am
concerned we may lose what made the CDRN so successful – its collegiality, supportive
structure and singular sense of purpose.
Building a strong network of ‘research savvy’ consumers and developing trust between
consumers and researchers takes time, commitment and support. We must ensure that
consumers who want to be involved in research are well supported to do so, receive
training to build necessary skills to be effective, and are part of a strong network.
People with dementia, their carers and families are central to the ‘Big Picture’ for
dementia research. There is much to be done to achieve the goal of a world without
dementia, alongside improving the lives of those living with dementia. Not only are
consumers the ultimate beneficiaries of research but we can and should be actively
involved in all phases of the process.
I am proud to be known as a ‘friend’ of the DCRCs and look forward to seeing the fruits
of our joint labours healthily ripening. I dedicate my work to my late husband, Alan
Newsome, as I remember his poignant and oft repeated words during his illness: “Please
help me, I’m afraid”. My hope is for a less frightening world for people with dementia
than the one Alan experienced and in which carers are supported to build the skills they
need to support those they love.
Executive Editor Professor Richard Fleming
(02) 4221 3422,
Managing Editor Kerry Schelks
UK Editor Mark Ivory
Production Editor Andrew Chapman,
Website Manager James Baldwin
Publisher Dr Richard Hawkins
The Australian Journal of Dementia Care is
published six times a year by Hawker
Publications Australia Pty Ltd, 7 Conrad
Place, Wishart, QLD 4122.
Printed by Spotpress, Sydney.
© Hawker Publications Australia Pty Ltd 2016
ISSN 2049-6893
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Address Building 233 (ITAMS), G13,
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(see page 68 for details) from DCA,
Australian Journal of Dementia Care
Advisory Board
Professor Henry Brodaty AO, Director,
Academic Department for Old Age Psychiatry,
Prince of Wales Hospital and Dementia
Collaborative Research Centre, UNSW
Marily Cintra, Executive Officer, Health and
Arts Research Centre, Inc, Canberra
Professor Elizabeth Beattie, Director Qld
Dementia Training Study Centre,
Queensland University of Technology
Dr Penny Flett AO, Chief Executive Officer,
Brightwater Care Group
Emeritus Professor Rhonda Nay, La Trobe
University
Kathryn Quintel, Director SA/NT Dementia
Training Study Centre; CEO Alzheimer’s
Australia SA
Tara Quirke, Member of the Alzheimer’s
Australia Consumer Dementia Research
Network
Margaret Ryan, Head of Dementia Services,
Bupa Aged Care
Dr Andrew Stafford, Director WA Dementia
Training Study Centre, Curtin University of
Technology
Dr Margaret Winbolt, Director Vic/Tas
Dementia Training Study Centre, La Trobe
University
Disclaimer
The opinions expressed in the Australian Journal of Dementia
Care are those of the authors and are not necessarily those of
the publisher. Furthermore the publisher and authors do not
assume and hereby disclaim any liability to any party for any
loss, damage, or disruption caused by errors or omissions,
whether such errors or omissions result from negligence,
accident, or any other cause.
Don’t lose sight of the consumers
C O M M E N T
2 Australian Journal of Dementia Care October/November 2016 Vol 5 No 5
By Dr Jane Thompson, member of the
NHMRC National Institute for Dementia
Research Board, DCRCs’ Coordinating
Committee, and the former Consumer
Dementia Research Network Dr Jane Thompson with her late husband
Dr Alan Newsome