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 Edition 4      March 2016

Welcome to the fourth edition of NHMRC CDPC News

Hi everyone and welcome to our first newsletter for 2016.  

One current piece of news is the launch of the National Dementia Guidelines (see page 2) and now work on the implementation of these important recommendations is beginning.

We also have some very good reading on several other projects that are in progress or have recently been completed.

A number of new projects have also been approved to start in 2016 and our consumer network have been busy supporting these in the approval process as well as being involved in areas outside the CDPC.

We hope you enjoy reading this edition and please let us know if you have anything you would like us to highlight in upcoming newsletters.


Director and Chief Investigator
NHMRC Partnership Centre: Dealing with cognitive and related functional decline in older people (CDPC)

Inside the CDPC

First-ever Dementia Clinical Guidelines - potential to transform dementia care in Australia


The CDPC, Activity 13 and Guideline Adaptation Committee are excited to announce the first Australian guidelines on dementia were launched last week by the Minister for Health, The Hon Sussan Ley, MP at the Alzheimer’s Australia National Consumer Summit at Parliament House.

Alzheimer’s Australia National President Professor Graeme Samuel AC opened the launch with an acknowledgement of the important contribution consumers played in the development of the guidelines and that this involvement ensured the document is relevant to the needs of people with dementia and their carers.

He also recognised the critical role the CDPC and its researchers played in their development.

“These guidelines are an example of the impact that can be achieved when consumers partner with clinicians and researchers,” he said.

The Health Minister, The Hon Sussan Ley acknowledged that dementia is a National Health Priority and these guidelines will help reduce unwarranted variations in care.

“The guidelines have been developed specifically for Australia and are designed for use by health care professionals working with people living with dementia,” The Hon Sussan Ley, MP said.


Read more



CDPC Annual Meeting 2015


Working together for change

The CDPC Annual Meeting is always an event that our members look forward to and 2015 was extra special. At Helping Hand’s state of the art facility Northgate, we not only had the privilege of being hosted by one of our funding partners but the environment at Northgate instilled a real sense of purpose to the work we are doing at the CDPC to improve the lives of people living with dementia.

Our expanding network of Activities, and the fact that we are almost half way through our initial five year funding period, meant the event moved from a single day in 2014 to a two-day format in 2015. This provided ample opportunity for CDPC members to engage in active discussions in a relaxed  and friendly environment, something we acknowledge is vital to effectively work together.

This year it was fabulous to have twelve of our our Consumer Dementia Research Network in attendance and  following a warm welcome from host CEO Ian Hardy, Kate Swaffer, one of our consumer representatives living with a diagnosis of dementia, gave the opening presentation.

Kate highlighted the importance of actively involving people with dementia in research projects about dementia, the benefits their knowledge and expertise can bring and the challenge to get more people with dementia defining the research question. Carol Bennett, CEO of Alzheimer’s Australia, reiterated the importance of the consumer voice and the vital role consumers play in shaping work that is delivered by Alzheimer’s Australia, while Louise O’Neill from the Department of Health and Aged Care, outlined the Government’s push toward a consumer empowered, consumer lead system of aged care.


Read more


Building on success - developing CDPC partnerships into the future


In an interactive session in the second day of the annual meeting, network members participated in a series of discussions around several questions that emerged from the baseline evaluation of the CDPC.

An Action Plan, which addresses some of the answers to these questions has been developed and will be implemented by the CDPC Administration Team in 2016.

This image above is reflective of the three key values that underpin all CDPC work: working together, diversity, and change informed by research.

Working together

The CDPC involves consumers, industry partners, researchers and clinicians throughout the research process to ensure that research findings are relevant to practice. Good collaboration occurs when there is:

  • Consistent, clear communication
  • Clear roles, responsibilities, and expectations
  • Clear, commonly agreed goals
  • A plan for demonstrating and celebrating success
  • A process for solving problems


Read more

Activities in Action

Why advance care planning needs to be different for
people with dementia


Following an extensive public consultation process, highlighted in our previous newsletter, the final report titled “Future planning and advance care planning: Why it needs to be different for people with dementia and other forms of cognitive decline” has now been released.

The research, a collaboration with  HammondCare, provides seven key recommendations that aim to assist in developing a national model for advance care planning for people with dementia and other forms of cognitive impairment.

The main findings are that for people with dementia:

  • ACP should cover an extended period of time and include a wide range of issues
  • Individuals should receive a timely diagnosis of dementia and information about the potential prognosis
  • ACP should be done as soon as possible after diagnosis of dementia, if not done previously
  • Effective ACP requires conversations that focus on understanding a person’s values and beliefs, and what is important to them
  • The appointment of one or more substitute decision-makers is critical
  • They should be involved in discussions and decision-making as much as possible
  • Particular care is needed with transfers between health and care settings

Read more

Vitamin D Implementation (ViDAus) study now underway

The Vitamin D Implementation (ViDAus) Study is now well under way with 32 NSW sites recruited from two aged care organisations and SA sites being finalised, meeting our recruitment target of 30 participating sites.

The aim of this trial is to evaluate the effectiveness and feasibility of a multifaceted interdisciplinary intervention to increase adequate vitamin D supplement use in Australian residential aged care facilities (RACFs).

The current Cochrane review for interventions to prevent falls in RACFs, and The Australian Commission on Safety and Quality in Health Care’s (ACSQHC) Falls Prevention guidelines recognise the strong evidence for use of vitamin D supplements in the aged care population, and recommend that all residents be considered for vitamin D supplementation. The most recent study on the prevalence of vitamin D supplement use conducted as part of this activity found that less than half of residents were prescribed adequate doses of vitamin D from a sample of over 1500 residents across three Australian states.


Read more

Evaluation of the support worker model of care

A variety of roles and models of support have been developed and implemented worldwide to assist people and their carers to: adjust to living with memory loss; navigate the health and aged care system; and access services, information and support.

Currently, there is a lack of evidence of the efficacy of the support worker roles for people with dementia, their carer’s and family within the Australian context. Therefore we undertook a two phased project that included a systematic review of international and national literature focusing on dementia support worker roles and a qualitative evaluation of dementia support worker type roles currently in operation across Australia. The objectives of this CDPC activity were to:


  • Assess how the support worker role can best be utilised to assist community-dwelling people with dementia and their carers/family;
  • Develop recommendations to inform policy and practice change and provide a framework for further implementation of the support worker models within different organisations such as Primary Health Networks, advocacy organisations, community groups and other partner organisations.

Read more


The Consumer Voice

2016 - a Brand New Year!

Reflecting...Taking Stock...Planning Ahead!

Reflecting ……… Where have we been?

CDPC Annual Meeting:

Our third CDPC Annual Meeting, with a theme of Working Together for Change,  appropriately reflecting the stronger working ‘partnerships’ between all members of the CDPC  and, as increasingly experienced by the consumer members of the CDPC Consumer Dementia Research Network (CDRN) through 2015.     The CDPC generously supported ten CDRN Members to participate.   Kate Swaffer was invited to present a Keynote address – Nothing About Us, Without Us.    A Poster developed by Jane Thompson & Louise Heuzenroeder on our involvement in Activity 13 titled Partnering with consumers to develop the Australian Clinical Guidelines for Dementia in Australia, was also invited.

Other CDRN Activities:

Joan Jackman was a consumer representative on the ACSQHC Delirium CCS Working Group, which finalised its advisory work in September.    The Clinical Care Standards will be launched at the 3rd Biennial Conference Australasian Delirium Association, in Sydney (14-15.7.16).    Alzheimer’s Australia has subsequently developed a new Delirium Q & A Sheet (No: 21) titled Delirium and Dementia.  Jane Thompson was invited in December to join the ACT Dementia Services Advisory Group, which will be developing the first ACT Dementia Services Action Plan.

Read more

CDPC Network Support

Health economics update

The Health Economics Enabling Sub-unit team has been busy helping evaluate activities, develop new ones and tackle some big issues in economic evaluation of dementia care.

We have been on the road and in the air and have met with current activities in Adelaide (Weavers), Sydney (Advance Care Planning) and Melbourne (Regulations in Aged Care) as well as having lots of teleconferences and emails. We have a trip planned to Brightwater in WA in February to look at the economic evaluation of the inter-professional education program. We have also been involved in the development of several EOIs to go to the next round of funding.
We have been busy building a model to inform future directions in the area of advance care planning and a publication will be submitted soon.

Measuring quality of life is a key issue in dementia and we have undertaken a psychometric analysis of a commonly used quality of life instrument – the QOL-AD and looked at the domains it measures. It performed well and the next steps are to test if this is a valid tool with consumers and then to value the health states. We have developed an EOI to continue the next steps.       

We are also confronting some of the thorny issues with health economics in dementia and are currently undertaking a systematic review of the types of models that have been used to date in economic evaluations of dementia (we think we can do better – and Activity 15 will show you how!)

This year we are planning to develop a “tool box” a simple summary of what is available to use for data collection (such as which quality of life instrument should you choose?)

Dr Tracy Comans, Health Economics Enabling sub-unit Lead
Please feel free to contact Tracy and Kim


Implementation of research findings: An industry perspective

The Cognitive Decline Partnership Centre (CDPC) started life by adopting a unique approach to how research could be considered in an environment where changing demographics is affecting every facet of life.

Through the guidance of a ‘Knowledge Broker,’ the NHMRC and a group of aged care providers collectively attempted to undertake a new & innovative research approach, which was more closely aligned with industry and consumer practice. The anticipated results were aimed at better translation of research knowledge into practice. This approach and the activities which came out of it have led to an interesting, and sometimes challenging journey for the CDPC.

Implementation of findings is a critical component of the research process. However, even in the CDPC, not all research that had implementation as a primary objective has yet been implemented.

Read More
CDPC Celebrates Success


We would like to congratulate the below teams whose research Proposals were approved for funding at the recent CDPC Governance Authority meeting.

CDPC 1321 (Lindy Clemson et al): Implementing Care of Older Persons with Dementia in their Environments (COPE) in the Australian context.
CDPC 1324 (Craig Sinclair et al): Supported decision making in dementia care.
CDPC 1325 (Anneke Fitzgerald, Joanne Curry): Consumer journey modelling - Ideal state project.
CDPC 1328 (Karla Seaman, Rosemary Saunders): Developing and implementing an interprofessional tool-kit for staff in residential aged care to better support the care needs of people with cognitive and functional decline.

We wish these teams well as they commence their research.

We would also like to congratulate

Professor Simon Biggs who was conferred the Award of Fellow from The British Academy of Social Sciences. Fellows were drawn from across the spectrum of academia, practitioners, and policy makers and have been recognised for the excellence and impact of their work in the social sciences. this is the first year that Ausrlain citiznes have been eligible to receive the Award and was one of two Australians on this prestibuos list of 42 leading scoclai scientist.

Dr Kate Laver for winning the Flinders Universities  2015 Vice-Chancellor’s Award for Early Career Researchers, which recognises her outstanding contribution as an early career researcher. Kate certainly is a worthy winner as she has worked tirelessly to achieve the release of the first Clinical Practice and Principles of care for people with dementia in Australia.

Dr Ron Sinclair for being awarded an Order of Australia Medal for service to people with Alzheimer’s Disease and environment biosecurity management.

Jennifer Thompson, Operations Manager, CDPC Administrative Team


Communications update

The CDPC Administration team listened to your feedback and have started to put together more resources so our members can keep up to date with what is happening in the CDPC and share in our successes.

The CDPC website is an evolving beast. We are currently working on the home page to be more engaging and will display our successes via text, images and video. A number of Activities are using the CDPC website of a resource hub that enables external collaborators and interested parties access to their reports, brochures, external websites etc. If you would like a page set up for your activity please contact Sally Grosvenor at

Pages for you to look at include:

CDPC HomePage

CDPC About Us

CDPC Research Page

CDPC Resources Page

CDPC One Pager:
This document provides a snapshot of who we are, our vision, mission and goals. These statements can be applied to presentation templates, email signatures etc when talking about the CDPC to our internal and external audiences. We are currently developing the flip side to the one pager which will highlight our areas of research and where we are having an impact on improving the care of people with dementia.

If you have any suggestions as to what you would like to see on the CDPC website, please feel free to contact Sally Grosvenor at

CDPC Member Profile

Alexandra Nikitas

What is your role in the CDPC?
I have come on board as the Project Administrator for the CDPC team. I will be collecting and analyzing data for the overall CDPC evaluation, and working with the Research Fellow – Evaluation (Shannon McDermott) over the coming years to assist in managing this process. Additionally, I will provide project management and administrative support to the CDPC administrative team.

What did you do prior to joining the CDPC?
Prior to this I worked at Boston Scientific, a global medical device company, as a Project Support Officer. I hold a Bachelor’s degree in Psychology, and am also currently studying to complete a Master of Public Health at University of Sydney part time, and will complete my degree in June 2016.

What do like to do when you are not at work?
I enjoy spending time with my husband and going to the beach near our apartment in Rose Bay. We are lucky to live in such a beautiful area, and I enjoy swimming, running and other fun outdoor activities. I grew up in the cold, wintery climate of the Northeast of the USA, so I just love it here! I am also an avid reader. I’m a big Stephen King fan and haven’t read a book of his I don’t like! I also love to cook and enjoy creating new recipes all the time.

Tell us one thing about yourself that we might not know
I played the saxophone all through primary school, and then was part of the marching band in high school. I marched in the Macy’s Thanksgiving Day parade in NYC along with 350 other high school band members – it was such an awesome experience!

Describe yourself in three words
Positive, inquisitive, compassionate

What is your best achievement?
One of my best achievements is moving & settling in Australia at the age of 22, and then just recently gaining citizenship. I am proud to call myself both an American & an Australian.


Dr Craig Sinclair

What is your role in the CDPC?
I am one of the investigators on the recently approved CDPC Activity 24: “Optimising advance care planning in dementia through supported decision-making”. Supported decision-making is a progressive, rights-based approach that has developed mostly through the disability sector. Supported decision-making aims to assist people with cognitive impairment to maintain involvement in decision-making, typically through provision of a ‘support person’ (or persons). This project aims to study community perceptions of supported decision-making in the context of dementia care, as well as identifying key law reform challenges and developing educational materials to assist community members who may provide support for a person with dementia.

What did you do prior to joining the CDPC?
For the last five years I have been working with a rurally-based research team, investigating implementation of advance care planning in Western Australia. As a post-doc in psychology, this has been a great chance to better understand the palliative care and residential aged care sectors, and I’ve developed a great respect for the people who are drawn to this work as a vocation. Through our group’s work in advance care planning I have seen how there is still scope for improvement in the way that people with cognitive impairment are supported to maintain involvement in communicating their wishes about healthcare and lifestyle issues. Activity 24 aims to address this area.

What do you like to do when you are not at work?
When I’m not at work I enjoy playing guitar with my partner Lara and some friends, in a little folk/bluegrass band called the Pepperjacks. We play mostly around Albany and Denmark in WA.

Tell us one thing about yourself that we might not know?
I am being mentored by one of my students in social media 101, so have a blogging and editorial role with online palliative care virtual community ‘’ through twitter and wordpress. I still only check facebook three times a year.  

Describe yourself in three words.
Curious, earnest, musical

What is your best achievement?
Finding my lovely partner Lara and enjoying our tenth year together in 2016.


Upcoming Events

Technology and Telehealth Workshop (CDPC Members only)

9 May 2016 10:00am- 4:30pm
Kolling Institute, Sydney NSW





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