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 Edition 6      December 2016

Welcome to the sixth edition of NHMRC CDPC News

Hi everyone

Welcome to our last newsletter for 2016, as we wind down for the Christmas break.

Thank you to all of you for making it such a very good year for the CDPC.

As you will see from the various reports in this newsletter we have a number of new projects beginning, lots underway, and several projects nearing completion or finished. Examples include the Consumer Companion Guide to the Clinical Practice Guidelines which was launched in November this year and has been very well received. It is an excellent example of consumer involvement at all levels. We will look at disseminating it widely in 2017.  Another example is the project looking at the effect of state and federal regulations on care for people with dementia. It is a very interesting and important area and you can read more in this newsletter. Falls occur more often in people with dementia than in those without dementia and the results of one of our projects showing that exercise can improve balance is described in this edition.

The Annual Meeting in mid November was a wonderful opportunity for everyone involved in the CDPC to come together. It is a time to showcase our achievements and that certainly occurred during this meeting. There is so much happening and we are trying to ensure that everyone involved in the CDPC is aware of what work is occurring, and that people have the opportunity to contribute to each other’s activities.

I would like to wish you all a happy and peaceful Christmas break and all the best for 2017.



Inside the CDPC

The CDPC comes together: 2016 Annual Meeting


It is always a valuable time when the CDPC Network Members come together for our annual face-to-face meeting. Held in Sydney, over 75 attendees including consumers, academics and partner organisation members gathered to share and discuss their latest research findings, stories and learnings. With the CDPC now half way through its first five year funding term the theme of this years’ meeting was “Translating evidence into practice”.

Professor Susan Kurrle, CDPC Director and Chief Investigator, opened the meeting with a presentation “Half way though: how far have we come?” providing an overview of the CDPC’s evolution from a small working group focused on 14 research projects to the current CDPC Network of over 250 members and 33 projects.

Sue also took the opportunity to launch the CDPC Mid-Term Report, a document that highlights our significant achievements to date and the impact that we are already having. A link to the CDPC Mid-term report can be found here or on the CDPC webpage.


Read more

Consumer Companion Guide to the new Australian Dementia Guidelines launched


A consumer companion guide entitled “Diagnosis, treatment and care for people with dementia” was launched at Parliament House on November 9, 2016. This resource uses accessible language to provide practical guidance about important aspects of the Clinical Practice Guidelines and Principles of Care for People with Dementia for people living will with dementia.

Australia’s first clinical practice guidelines for people with dementia were released early in 2016 and while guidelines are primarily intended for use by health professionals, they are also valuable for consumers as they provide details regarding the expected level of care. It was therefore important to develop a companion guide for members of the public to complement the Clinical Practice Guidelines and Principles of Care for People with Dementia.

As part of the Activity 13 project, a collaborative working group including five consumer representatives (four care partners and one person with dementia) was formed to determine the aims and desired format of the consumer guide.


Read more

Consumer Companion Guide to the new Australian Dementia Guidelines launched


As part of dementia awareness month, CDPC researchers took part in a number of speaking events across Australia. Professor Maria Crotty and Professor Craig Whitehead delivered the Alzheimer’s Australia Dementia Awareness Forum on “Rehabilitation and dementia: the evidence on maintaining independence” in Darwin, Hobart, and Adelaide and “Dementia: ‘Prescribed disengagement or active engagement’” in Perth.

On World Alzheimer’s Day, 21 September 2016, Alzheimer’s Australia Dementia Research Foundation held a panel discussion event titled “Quality dementia care: What do we value?”. Invited speakers included Dr Ron Petersen, Director of the Mayo Alzheimer’s Disease Research Center and the Mayo Clinic Study on Aging in the U.S, with Professor Elizabeth Beattie, Ms Therese Adami, Ms Maree McCabe, Mr Trevor Crosby and Professor Susan Kurrle.

The expert panel came together to discuss the care needs of people living with dementia and their carers and ways to improve quality of care for people with dementia.


Activities in Action

Home-based exercise program improves balance


Older people living with a diagnosis of dementia have a high risk of falls, with more than 60% falling annually and 40 percent having multiple falls.  A quarter of  hospital admissions for people living with dementia are due to falls and there is an increased risk of other adverse events such as mortality, morbidity and pavement in aged care facilities after a fall.

A recent study conducted by Dr Morag Taylor, Activity 19, published in International Psychogeriatrics, pp. 1–11. doi: 10.1017/S1041610216001629,  has shown that a home-based exercise program can significantly improve balance in older people with cognitive decline.

Poor balance and depressive symptoms have been shown to increase the likelihood of falls in older people with dementia.  In cognitively intact older people exercise has been demonstrated  to reduce falls and improve mood; however there is little information available for people living with dementia.

This preliminary six-month study examined a home based, carer supported exercise program and measured mood and balance in people with mild to moderate dementia who were over 60 years of age. The study also examined concern about falls, physical activity and quality of life indicators.


Read more

Evidence of effects of regulation in aged and dementia care help target valuable resource allocation.


As one of the CDPC’s initial projects approaches its final stages some interesting findings are emerging.  This three year study aimed to examine the role and effects of regulation in aged and dementia care and gain a greater understanding of why we regulate care.

During the early stages of research, regulatory systems were mapped to reveal the uneven spread of regulation throughout the system, showing how regulation clusters around particular individuals, care sites and care-related activities.

This clustering takes place in four ways:

  1. Through the overlap and duplication of different government responsibilities, jurisdictions and regulatory authorities.
  2. By accretion as more regulation has been added over time in response to risk, scandal and system failings.
  3. The interplay of multiple regulations at care transition points.
  4. Differing levels of regulation depending on the care activity.

While these findings may come as no surprise to those involved in aged and dementia care, they provide evidence on where resources and efforts to improve care amidst regulation are best targeted.

Read more

The Consumer Voice

Dementia in the public domain

Tara Quirke and Danijela Hlis (members of the CDPC Consumer Group)were privileged to attend the recent Anglicare conference and with our thanks to the CDPC for sponsoring us, Anglicare for having us and  Dr Irja Haapala and Prof Simon Biggs for including us in the running of the workshop, we are happy to share this with you.

There were some great speakers at the conference.  My favourite was the charismatic Charlie King, sports commentator on ABC and great advocate for Aboriginal people and their fight against domestic violence and addiction. Charlie’s mother is a Gurindji woman and he is the founder of the NT born campaign NO MORE. Prof Simon Biggs also gave a great talk that made us really reflect and look at things more closely.

Day 2 of the conference was for the delivery of the CDPC Activity 18 workshop: “Public perceptions of dementia and general intelligence.” The aim of the session was to examine the role of intergenerational relationships in the way that dementia is described in the public domain. The outcomes will be used to inform research for the CDPC and will include input from our consumer and provider advisory group.

Read more

CDPC Network Support

CDPC’s Emerging Impact: Findings from
informal impact interviews

Informal interviews conducted by the CDPC Evaluation team over the last quarter revealed that the CDPC is having an emerging impact on policy and practice.  While the CDPC has made some considerable progress, the interviews revealed that some Activities are more advanced than others in thinking about how their work will impact future policy and practice.

The CDPC aims to improve the care of people with dementia through supporting the implementation and evaluation of tested models of care; synthesising and disseminating research on best practice in the care of people with dementia; undertaking collaborative new research that explores innovative ways of caring for people with dementia; and building capacity to do applied research and to use research in practice. The work undertaken by the CDPC will result in progress against nine impact areas, which were identified in the original work plan.

The CDPC Evaluation team undertook informal interviews with 20 people to document the progress Activities are making towards achieving policy and practice impact.

Read more

Maximising Communication to Accelerate Implementation of
Improvement in the Lives of People Living with Dementia

We all want to increase the spread and speed of improvements in care for people living with dementia. Improving communication of robust, actionable knowledge to industry partners helps us apply and share CDPC findings to the benefit of large numbers of people affected by dementia. Each CDPC partner organisation reaches thousands of people through their marketing communication programs, each with a stake in improving the lives for people living with dementia.

Combining exploratory, knowledge-creating academic research with implementation research offers opportunities and also presents communication challenges. At the request of the Executive Committee Jan Van Emden (Helping Hand), Sally Grosvenor (CDPC Communications Officer) and Kate Hayes (CDPC Management of Change and Workforce Enabling Sub-Unit) have been working with industry partner key contacts(Designated System Based Investigators/ DSBIs) to maximise opportunities for knowledge translation, dissemination and implementation.

Distributing a discussion document summarising opportunities and challenges to improving communication to the lead DSBI at each aged care partner organisation was followed by a phone interview, which in some cases included partner marketing communication and research personnel.

Read More
CDPC Update

CDPC Directorate/Operations Update

The CDPC Directorate/Operations team congratulate Ali Kitching (nee Nikitas) our Project Administrator on graduating recently with her Masters in Public Health, and Dr Emily Reeve, NHMRC-ARC Dementia Research Fellow and Activity 11 team member (Quality Use of Medicines) who was a finalist for the BUPA Emerging Health Researcher of the Year. Our CDPC congratulations also go to Kate Swaffer, dementia advocate, who won South Australia’s Australian of the Year award for 2017, making her a nominee for Australian of the Year, with results to be announced on 25th January 2017.

Over the past months our team have been busy attending a number of events and conferences to present, participate, and talk about the CDPC’s work. These events have included: the 2016 Ministerial Dementia Forum – Redesigning Dementia Consumer Supports (by invitation); the 5th Annual NHMRC Symposium on Research Translation – Embedding Research into Health Care: Building a Culture of Quality; the Australian Clinical Trials Alliance (ACTA) Summit 2016 – IMPACT, Maximising the health and economic benefits of investigator-initiated clinical trials & registries; the COTA Strengthening Dementia Services – Reform & policy driving cutting edge & competitive dementia care; and, we were separately invited to take part in a teleconference with our Department of Health, Dementia Section partners to discuss the direction of consumer support programs prior to the Dementia Forum.

Read More

CDPC Publications
Dyer, S. M., Crotty, M., Fairhall, N., Magaziner, J., Beaupre, L. A., Cameron, I. D., & Sherrington, C. (2016). A critical review of the long-term disability outcomes following hip fracture. BMC geriatrics, 16(1), 158.

Laver, K., Cumming, R., Dyer, S., Agar, M., Anstey, K. J., Beattie, E., ... & Dietz, M. (2016). Evidence‐based occupational therapy for people with dementia and their families: What clinical practice guidelines tell us and implications for practice. Australian Occupational Therapy Journal.

Taylor, M. E., Lord, S. R., Brodaty, H., Kurrle, S. E., Hamilton, S., Ramsay, E., ... & Close, J. C. (2016). A home-based, carer-enhanced exercise program improves balance and falls efficacy in community-dwelling older people with dementia. International Psychogeriatrics, 1-11.

Goeman, D., Comans, T., Enticott, J. C., Renehan, E., Beattie, E., Kurrle, S., & Koch, S. (2016). Evaluating the Efficacy of the “Support for Life” Program for People with Dementia and Their Families and Carers’ to Enable Them to Live Well: A Protocol for a Cluster Stepped Wedge Randomized Controlled Trial. Frontiers in Public Health, 4.

Perimal-Lewis, L., Bradley, C., Hakendorf, P. H., Whitehead, C., Heuzenroeder, L., & Crotty, M. (2016). The relationship between in-hospital location and outcomes of care in patients diagnosed with dementia and/or delirium diagnoses: analysis of patient journey. BMC geriatrics, 16(1), 190.

CDPC Member Profile

Gaynor Parfitt

What is your role in the CDPC?
I am a Principal Investigator on Activity 29, the Exercise Prescription in Aged Care evaluation project.

What did you do prior to joining the CDPC?
I have worked at Uni SA’s School of Health Sciences as an Associate Professor in Sport and Exercise Psychology since 2011. Previously, I held positions in the School of Sport and Health Sciences at Exeter University, England (2004-2011) and the School of Health and Exercise Sciences at Bangor University, Wales (1989-2004).

My early research was in the area of anxiety and performance, during which I worked with a number of international squads. More recently, my research has focused upon the chronic effects of exercise on psychological health; methods to motivate exercise behaviour change within community and rehabilitation environments; and mechanisms associated with the affect-exercise intensity relationship. My research with sedentary and active children and adults has employed quantitative and qualitative methodologies to understand the mechanisms and processes integral to psychological health and exercise behaviour.

What has surprised you most about working for the CDPC?
I’m not sure that there is anything in particular that has surprised me, but I have been very impressed by the collaborative nature of the CDPC, and the opportunity to network and disseminate project-related information at functions such as the November Annual Meeting.

What do you like to do when you are not at work?
I try not to think about work, and instead have fun with the family; lots of outdoor activity; music, theatre, and film; and house renovation.

Tell us one thing about yourself that we might not know?
In the 1990’s, I broke my neck skiing.

Describe yourself in three words:
Tenacious, passionate, loyal.

Raising healthy, happy children, and maintaining a successful academic career whilst doing so, is my best achievement!

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