Consumer Involvement in Research

The NHMRC National Institute for Dementia Research (NNIDR) is dedicated to creating an environment where people with dementia, their carers and families and the wider public are actively involved across all stages and types of dementia research.

The NNIDR Dementia Care Forum took place on Wednesday 18 October as part of the Dementia Australia National Conference 2017. The Forum was attended by 29 participants comprising people with dementia, carers, researchers and representatives from service providers, research organisations, peak bodies and government.

Participants worked together to answer four questions that were intended to drive conversation about how we can better involve people with dementia, their carers and families, and the wider public in dementia research. The Involving Consumers in Research Towards Better Care Outcomes Communique outlines the vision, values and purpose of the NNIDR Consumer Involvement in Research work program.

The NNIDR is committed to the vision expressed in the NHMRC Statement on Consumer and Community Involvement in Health and Medical Research and will promote its implementation across the dementia research sector.

World Alzheimer Report 2018

Alzheimer’s Disease International supported Novartis, Amgen, and Banner Alzheimer’s Institute (BAI), to conduct what is the largest global Alzheimer’s survey to date, to help understand public attitudes towards the condition and to participation in medical research.

Survey participants

  • Sample size – 10,000
  • Survey participants included adults 18+ living in Argentina, Canada, China, France, Germany, Italy, Japan, Spain, the UK and the US. 

Key findings from the global survey

Key findings were announced on Monday September 17, 2018, as part of World Alzheimer’s Month, including:

  • 62% are worried they may develop Alzheimer’s disease
  • 91% believe the solution to tackling the problem lies in medical research
  • 79% are willing to take part in medical research, however
  • 74% have no idea how to get involved

The Australian context

Participating in clinical trials

For people who are interested in participating in clinical trials related to Alzheimer’s disease and other forms of dementia the following websites have further information:

Being involved in research as part of the research team

The NHMRC National Institute for Dementia Research is working with consumers (people living with dementia and their informal carers) and community members to build the involvement of consumers in dementia research.

What we mean when we say ‘consumer involvement in research’ is research that is carried out with or by consumers and community members rather than on, about or for them. For example:

  • working with researchers and research funders to set research priorities
  • being members of grant application review panels
  • contributing as members of project steering groups
  • commenting on and developing research materials
  • being a ‘research buddy’ or link between the researcher and the public, and
  • helping with dissemination and implementation of research findings.

Our main task to end June 2019 is to develop learning materials for consumers and researchers on how to involve consumers in research.

Join the NHMRC National Institute for Dementia Research Membership Network

If you are a person living with dementia or a carer of a person living with dementia and are interested in receiving updates on how this work is going and/or becoming involved in dementia research a little down the track, we welcome you to join the NNIDR Membership Network.

To find out how to join please email us at nnidr@nnidr.gov.au or call us on 02 6217 9170. There are no membership fees to join.