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 Edition 5      July 2016
Hi everyone

The CDPC has now been in existence since April 2013, with the real work starting two and a half years ago in February 2014 when funds started flowing. So we are now officially halfway through our term, and it is great to see the outputs happening, and changes starting to be seen as a result of activities. Many of you will be asked to answer questions about the impact of activities with which you are involved later this year.

As this newsletter shows, many of us have been busy presenting in a variety of conferences and workshops. Don’t forget to let Sally Grosvenor know of any external forums such as talks and interviews where you have been letting people know about the great work we are doing.

I hope you enjoy reading this edition.

Sue

 
Inside the CDPC

Let's talk about us


The CDPC has been getting the message out this quarter and we are busier than ever. Individual members, including our consumers, have been talking about research findings across a variety of platforms including forums, conferences, workshops, and meetings, some of which are highlighted in this newsletter.  

As many CDPC projects now have significant results from their program of research, the CDPC has found showcasing these findings in symposium style presentations beneficial. These symposia not only highlight individual projects but the CDPC as a whole and how we are progressing in our aim to improve the care of people with dementia through communication, collaboration and knowledge translation.

At HammondCare’s recent International Dementia Conference, Grand Designs ‘Are we there yet’, Meredith Gresham, a CDPC Designated System Based Investigator (DSBI) from HammondCare, chaired a session introducing some of our projects that have completed or are near completion. Adele Kelley spoke about the recent release of their report “Future planning and advance care planning: Why it needs to be different for people with dementia and other forms of cognitive decline” and the seven key findings. Rachel Milte explained that her research examining what quality of care means to a person living with dementia revealed the two key themes of personhood and connectedness with family.


Read more

NNIDR Dementia Forum 2016

 


Since the Government’s announcement of the NHMRC National Institute for Dementia Research (NNIDR) the NHMRC Cognitive Decline Partnership Centre has been working towards building strong linkages to support national dementia research priorities.

The inaugural NNIDR Australian Dementia Forum held in Brisbane 1-3 May 2016 was an opportunity for the CDPC to showcase a number of our research projects, network with leading researchers in the field of dementia and develop important collaborations in the support of improving care for people living with dementia.

Professor Susan Kurrle was invited to present on the CDPC and outlined our unique partnership structure and diversity of our research program. The CHOPs program was described as evidence of how the CDPC is implementing its research into practice, and she also announced the new clinical practice guidelines for dementia and their application. There was much interest in the Guidelines, which were made available to attendees through our CDPC collateral stand.

 

Technology and Telehealth Workshop

 

We don’t receive wisdom; we must discover it for ourselves on a personal journey that no one can take instead of us. (Marcel Proust (1871- 1922)

As one of the members of Alzheimer’s Australia Consumer Dementia Research Network, I am always grateful when I am sponsored to attend a forum, conference or workshop, because I know it will enable me to learn new things, do great networking and be more trained for the work we do.

I now have a much better knowledge and understanding about Technology and Telehealth. This was crucial for me, as I am one of thousands of people of CALD background who are still a bit reluctant to embrace technology.

The session in the morning was live streamed, which enabled some external callers to participate and ask questions and also allowed interested parties to access the webcast after the event. You can find the morning session on the CDPC website at this link http://www.webcasts.com.au/cdpc-workshop-090516/

The workshop was coordinated by Professor Len Gray and his team within the Centre for Online Health and the NHMRC Centre for Research Excellence in Telehealth at the University of Queensland.


Read more
 
Activities in Action

What is needed to improve care planning for people living with dementia?

A public forum to launch the Report from Activity 5 and a related resource on family case conferencing for people with advanced dementia was held on 23 May 2016 at the University of Technology, Sydney.  The panel discussion was chaired by Professor Jane Phillips with panel member Imelda Gilmore giving a consumer perspective, and Dr Craig Sinclair and Professors Sue Kurrle, Meera Agar, Dimity Pond, Lynn Chenoweth and Deborah Parker providing comments based on the latest research and their experience.

The discussion explored a wide range of issues pertaining to improving care for those with dementia.  Improved decision-making, which involves the person with dementia and supports family involvement was discussed, along with the need to increase uptake of early advance care planning and improving care coordination during transitions between care settings.

Imelda Gilmore spoke about the value of having conversations early on with her husband with younger-onset dementia about decisions that would need to be made later. She indicated it was about focussing on his values and desires.  Lynn Chenoweth stressed the importance of person-centred care, which centres on the beliefs and values and what makes them a person and that people with advanced dementia can still communicate even if this in not with words.

 

Read more

Interprofessional Education toolkit to be developed for residential aged care

A report evaluating outcomes for Interprofessional aged care programs in residential aged care has been released by researchers at Brightwater Care Group (Activity 9).

Interprofessional education is defined as ‘When two or more professionals learn with from and about each other to improve collaboration and the quality of care’ (Centre For the Advancement of Interprofessional Education (CAIPE), 2002).

Those involved in aged care are acutely aware that the ageing population necessitates the creation of a sustainable workforce that is adequately educated and competent to work with older adults including those with cognitive and related functional decline.

Aged care funding partners, Brightwater Care Group and Helping Hand Aged Care, have developed interprofessional student placement programs in their residential aged care facilities. These programs provide training for students from a diverse range of disciplines, including medicine, dietetics, pharmacy, physiotherapy, occupational therapy, nursing and speech pathology.

 

Read more
 
The Consumer Voice

Alzheimer’s Australia’s new Consumer Engagement policy 


A new Alzheimer’s Australia (AA) consumer engagement policy was announced by the  CEO of Alzheimer’s Australia, Carol Bennett, in May 2016.    As stated by Carol Bennett, - “The policy outlines consumer involvement in AA’s work as a national advocacy organisation representing the interests of people with dementia, carers and their families”.

The National Dementia Consumer Network (Consumer Network) will support the involvement of a broad and diverse network of consumers in national dementia policy, programs and research.    The new flexible and inclusive Consumer Network will replace AA’s consumer groups, including the National Consumers Advisory Committee (NCAC) and the Consumer Dementia Research Network (CDRN).
   
AA will continue to support the discrete AA Dementia Advisory Committee (AADAC), the membership of which is only people with a dementia, recognising that people with a dementia may require additional support to be fully involved in the consumer engagement process.

A National Dementia and Diversity Leadership Network (Diversity Leadership Network) has also been established.    This Network will involve national peak bodies, community leaders, health professionals and researchers all contributing their expertise towards improved outcomes for groups with special needs. The Diversity Leadership Network will draw on best practice models from across health, aged care, community and other sectors.



Read more

CDPC Network Support

How we are measuring CDPC impact
 

As governments and external funders seek to better understand return on their investment into research, there is an increasing push for academic research to have broader societal impact outside of academia. Research impact is commonly defined as:

The effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia [1]

The partnership approach adopted by the CDPC aims to build a stronger link between research findings and practice by involving people who will use the research throughout the entirety of the research process.

Identifying the impact of knowledge translation programs such as the CDPC can be difficult: there is no accepted set of indicators that reliably measure research impact; it can be hard to attribute an observed impact to the research program; it can take a long time for the knowledge generated by research to have an impact on the ground; and collecting data can be time consuming and costly.

Identifying CDPC impact is an ongoing process, requiring agreement about organisational goals, alignment of CDPC activities to those goals, selecting the methods for measuring outcomes, analysing progress, and then feeding the findings back to the network.  To this end, we have spent the last year and a half speaking with stakeholders about our vision, mission, and goals in order to establish common ground among our diverse stakeholder groups.



Read more
 

How the Policy & legislation enabling sub-unit can support you?


Translation of research into policy and practice is not a simple linear process. As we learnt in the policy workshop held in 2015, it is a messy, interactive activity where windows of opportunity to influence policy come and go. It is important for researchers to understand the policy process, current priorities and the policy context of their research, as this will inform research questions and assist in communicating the relevance of outcomes.

Taking up opportunities to participate in policy development in your area/s of expertise when they occur, such as invitations to formal consultations or through advisory group membership, or by inviting policy makers to be involved in your research can help develop relationships and your sphere of influence.

Legislation and legal issues generally form the basis of change management for everything we do, including our research. Unfortunately we are often so caught up in the issues associated with our particular research we forget about potential legal implications.



Read more

Communicating your message: the consumer perspective

Collaboration between the CDPC Management of Change and Workforce sub-unit and the Alzheimer’s Australia Consumer Dementia Research Network (CDRN) sub-unit has produced a short document to help more people benefit from our work.

Ideas to Expand CDPC Communication Channels from the Alzheimer’s Australia CDRN Members

Engaging the expertise and lived experience of the CDRN members to answer the question “Where do consumers get dementia information in Australia?” produces communication channels that can expand the audience for your findings.  The knowledge available from CDRN members provides both tested and innovative routes to connect with the people most in need with the practical improvements we are creating together.

Using the media opportunities identified to both “push” CDPC findings to consumers, families and carers, and permit them to “pull” relevant information as required extends the reach and impact of your work. To ensure that the material you create is in a form that matches the needs of the audience you may like to use Katie Burke’s “12 Tips for Scientists Writing for the General Public” (linked below) to develop materials that state your message clearly through the use of simple words and sentences.
http://www.americanscientist.org/blog/pub/12-tips-for-scientists-writing-for-the-general-public  

The document will be available soon as an appendix in the Communications Protocol on the CDPC Intranet.

If you have any comments on the document – or ideas to improve or expand we’d be pleased to hear from you.
Kate Hayes (kate.hayes@westernsydney.edu.au),
Joan Jackman (Joan.Jackman@alzheimers.org.au)
Sally Grosvenor (sally.grosvenor@sydney.edu.au).

Kate Hayes: CDPC Management of Change and Workforce sub-unit

 

Communications update


There is so much happening within the CDPC and we really would like our members to have every opportunity to hear about it.

One of the best ways to keep up to date with successes, upcoming conferences, funding opportunities as well as new proposals, protocols and procedures is to log into our CDPC Intranet (SharePoint).

To access the SharePoint site go to CDPC Intranet and enter your Unikey and password.
https://workspaces.usyd.edu.au/sites/partnership/

Contact us to obtain your Unikey and password or for more information on the CDPC Intranet and other Network resources.

How to set your existing email to receive CDPC SharePoint alerts
You will be provided with a University of Sydney email address to accompany your Uni Key. We have set up these addresses to allow us to issue you with automatic and manual alerts via the SharePoint site. To access this email account, navigate to:

https://webmail.sydney.edu.au/owa/
If you would prefer all email to come to you via an existing email account, you can use the ‘Rules’ feature to re-direct all mail to your preferred account by following the steps below:
  • Log in to your University of Sydney mail via the link provided above.
  • After you sign in to Outlook Web App using your Unikey and password, click Options > Create an Inbox Rule.
  • On the Inbox Rules tab, click New.
  • Under When the message arrives, select Apply to all messages.
  • Under Do the following, select Redirect the message to.
  • Select the address you want your mail sent to by double-clicking on it in the address book view. If the address you want to redirect to doesn’t appear, you can enter the e-mail address in the To field.
  • Click OK to save your selections and return to the new rule window.
  • Click Save to save your rule and return to the Inbox Rules tab.

If you have any suggestions as to what you would like to see on the CDPC Intranet, please feel free to contact Sally Grosvenor at sms.cdpc@sydney.edu.au
 
CDPC Celebrates Success

Congratulations

We would like to congratulate the following Activity teams whose research Proposals were approved for funding since the last CDPC Newsletter came out to you. We wish these teams well as they commence their research.

•        CDPC 1333 (Tracy Comans, Kim-Huong Nguyen et al): Develop a preference based measure to value quality of life for people with a diagnosis of dementia or cognitive decline, using inter-disciplinary expertise of consumers, policy makers and researchers.
•        CDPC 1330 (Karla Seaman, Dr Brett Robertson): Do socialisation robots facilitate increase social engagement in aged care?

We congratulate Christine Bryden (AM) who was awarded an AM in the recent Queen’s Birthday honours list. Christine received this award for her significant service to community health through support for people with Alzheimer’s Disease and other dementias, and as a leading advocate and author. A number of our Activity teams had the opportunity of working closely with Christine in her previous capacity as a Consumer Dementia Research Network member with Alzheimer’s Australia.

Our administration team have been out and about around Australia over the past few months, attending a number of industry events and conferences. I myself have presented at: the ARCs conference in Sydney in May, on consumer involvement in all stages of research; at the IFA 2016 conference in Brisbane in June, giving an overview of the CDPC and two of its completed Activities; Helping Hand Aged Care Board of Directors and Executive team meetings in Adelaide in June, with myself and Sally Grosvenor invited to give an overview of CDPC Activities and communications strategies.

Jennifer Thompson, Operations Manager, CDPC Administrative Team

 
CDPC Member Profile

Danijela Hlis, Alzheimer's Australia CDRN member

What is your role in the CDPC?
I guess I am one of the consumers of CALD background that has been participating in research programs and well as training through CDPC since its inception.

What did you do prior to joining the CDPC?
I cared for my mother who had dementia, and worked as a bi cultural social support worker for Migrant resource centre, Italian Day centre, enabling people who speak Italian, French, Slovene, Croatian, to have some quality time with me through outings (I have lived in many countries and am fluent in these languages)

What do you like to do when you are not at work?
I am retired now so all my work is voluntary-through Alzheimer’s Australia, OzCare, COTA, ComLink; I love to travel and have just returned from Philippines where I visited a very dear friend who has dementia.

Tell us one thing about yourself that we might not know?
I am a published writer(poetry and prose)-you can google Danijela Hlis and learn more.

Describe yourself in three words: independent, compassionate, loving life.

What is the best advice you were ever given?
From my father, at age of 7:you make your own bed in life -so make sure is well made.

What is your best achievement?
Having enabled my aged parents who came into my care from overseas to live some happy years of their retirement; EVERY DAY IS A SUNDAY NOW-MY FATHER SAID.

Internal Events

CDPC Annual Meeting (CDPC Members only)

14-15 November 2016
The Sydney Boulevard Hotel, Sydney

Upcoming Events

Visit the CDPC Website at:
http://sydney.edu.au/medicine/cdpc/

Follow us on twitter at:
https://twitter.com/nhmrc_cdpc


CDPC Intranet:
https://workspaces.usyd.edu.au/sites/partnership/

Contact us:
sms.cdpc@syndey.edu.au

Our Partners

 
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