How you can get involved

Dementia Australia values consumer input and feedback. There are a number of opportunities for consumers to get involved in a range of Dementia Australia activities.

Participate in research - new studies listed on the Dementia Australia Dementia Research Foundation (AADRF) website

Get involvedSuccessful research relies on the involvement of people living with a diagnosis of dementia, their carers, support person and the general public. By participating in research you can contribute toward finding a cause, treatment or cure for this disease, assist the evaluation of innovative prevention strategies and improve dementia care.

Participating in dementia research can be a rewarding experience. If you would like to see what studies are available in your area, please visit the AADRF website

Advance Care Planning and Dementia Survey

Advance Care Planning Australia wants to better understand the experiences of people living with dementia, and those who care for people living with dementia, to help plan for future care.

There is limited research about how to support people living with dementia to communicate their preferences for their future health care. Responses from this survey will help understand needs and provide support and resources. 

Advance Care Planning Australia would like to hear from you if: 

  • You are living with dementia in the community
  • You provide care, or have provided care within the past 12 months, for someone living at home who is living with dementia.

This research is being conducted by Advance Care Planning Australia and is supported by Dementia Australia. Your responses will be confidential and you will not be identifiable from the research results.

If you would like more information contact Advance Care Planning Australia on (03) 9496 5660 or participate in the survey.

Shaping our future: Discussion on disability rights

The Disability Discrimination Commissioner, Alastair McEwin, is conducting national consultation to help progress and guide development of his priorities and seek input from the disability community on how he can most effectively work to advance the rights of people with a disability.

Written submissions are being sought in relation to the Commissioner’s five proposed priority areas: 

  • Employment
  • Education
  • Housing
  • The criminal justice system
  • Implementation of the National Disability Insurance Scheme (NDIS)

Dementia Australia intends on making a submission to this national inquiry. If you would like to provide input please send through feedback to the following questions to Leanne O'Neill by COB 13th December 2016.

  1. What do you think could be done to better protect the rights of people with dementia across the five priority areas?
  2. What do you think is already being done well in these areas that could be built upon to achieve greater systemic change?
  3. What would you like to see the Disability Discrimination Commissioner do to most effectively advance the rights of people with dementia in these areas?
  4. Do you know of any personal stories that Dementia Australia could use in our submission to highlight the issues?

You can also make an individual submission by downloading the submission form and send your completed form to [email protected].

For more information visit the Australian Human Rights Commission website or contact Leanne O'Neill or call 02 6278 8909.

Great Expectations Inspiring Hope Through Research 

Save The Date for an enriching event hosted by Dementia Australia ACT on 27 February 2017 at QT Hotel, Canberra.

The event titled Great Expectations Inspiring Hope Through Research will bring together the leading minds in dementia research in Canberra. For more information and to stay up-to-date with future announcements on our keynote speakers and an official program visit Great Expectations Inspiring Hope Through Research.

Be involved on a model for a new integrated carer support service system

The Australian Government is committed to supporting and sustaining the vital work of unpaid carers, and has developed a draft Service Delivery Model for a proposed new integrated carer support service system.

The draft Service Delivery Model outlines both the types of services and how those services are suggested to be delivered in a future model, focusing on: 

  • providing more services to more carers
  • reaching carers earlier in their caring by providing supports that build their capacity
  • reducing strain that may arise during the caring role
  • enable increased participation in education and the workforce
  • improving carer wellbeing. 

The Department of Social Services invites consumers to share their thoughts and feedback on a draft Service Delivery Model for a proposed future service by making a submission or by participating in the carer survey.

The carer survey and submission will be open until 5pm 16 December 2016.

Research project on the role of regulation in aged and dementia care

Take part in new research on the regulation of aged care services for people with cognitive decline. This research is part of the Cognitive Decline Partnership Centre and is being carried out by Prof Simon Biggs and Ashley Carr of the School of Social & Political Sciences, University of Melbourne. The project is seeking to include individuals living with dementia in the community and who currently access aged care services. Carers or supporters of people living with dementia in the community are also invited to take part.

The research is examining the role of regulation in aged and dementia care. We would like to know about your experience of aged care services and what you think the role of regulation is. 

Participants will be invited to take part in a 30 to 45 minute interview and to discuss the role of regulation in care, when rules or regulation were first encountered and what they think the value of regulation is.

Participants will be provided with a $40 gift voucher to thank them for their time.

If you are interested in finding out more about this research please contact Leanne O'Neill or call 02 6278 8909.

This research project has been approved by the University of Melbourne Human Research Ethics Committee (HREC No. 1647843)

Upcoming workshop on 'Reframing Dementia as Social and Cultural Experience' 

Registration is open for an upcoming workshop on ‘Reframing Dementia as Social and Cultural Experience.’

The workshop is a collaboration between the NHMRC Cognitive Decline Partnership Centre at Sydney University and the Department of Anthropology, School of Social and Political Sciences, Faculty of Arts and Social Sciences at Sydney University.

The workshop will be held on the 14th – 15th of February 2017 and will include:

  • How to change social attitudes towards dementia
  • How to develop access to dementia-friendly support and information for carers of people with dementia who live at home

To find out more and register your interest, visit the workshop website.

Do you care for a family member with dementia? 

If you are a family carer of a person living with dementia in the community you are invited to take part in a national survey about day centre respite care and your needs.

The survey is called “What is ‘A Good Day Out’? Working Towards Optimal Day Centre Respite Care and Ways to Measure It” and is being funded by the Dementia Collaborative Research Centre: Carers and Consumers at the Queensland University of Technology (QUT).

The DCRC and QUT want to hear your experiences and opinions. You do not need to have used respite services to take the survey. 

The survey can be taken online or by telephone. Take part in the survey or for more information contact Katy Wyles or phone (07) 3138 3852. 

Have you considered joining the network?

There are many more opportunities for consumer involvement in Dementia Australia activities and as people living with dementia or caring for someone with dementia, you really are the lived experience capable of driving change.

We look forward to working closely with you.

If you would like to join the Dementia Australia National Dementia Consumer Network please contact Leanne O'Neill or phone (02) 6278 8909.

Membership of the network is open to all consumers from across the country of all ages and backgrounds. You can participate as much, or as little as you like.