How can your lived experience help improve research?

You can help improve dementia research by sharing your knowledge gained through your life experiences. This type of involvement is different from taking part in a study as a research ‘participant’. It is not about filling in questionnaires or trialling a new drug. Being involved in the research process means that you work alongside the research team to help deliver outcomes that are relevant to people living with dementia, their care partners, and families. It means that the research is carried out with and/or by people with lived experience rather than being ‘on’, ‘about’ or ‘for’ them.

If you would like to take part in a research study as a participant, please visit the Step Up for Dementia website: http://www.stepupfordementia.org.au


Why dementia research is important

Dementia is the leading cause of disability in Australians over the age of 65 years and is the second-leading cause of death of all Australians (Dementia Australia, 2020).

Dementia research is about discovering new evidence or knowledge that may lead to treatments or a cure for dementia, or better care for people living with dementia. The research could be focused on causes of dementia, risk reduction and prevention, better ways to diagnose dementia, improving care, or enhancing quality of life for someone living with dementia or caring for someone living with dementia. Research can happen in a laboratory, health or care facility, or the community.


The involvement of lived experience experts may benefit research in several ways

Involving people with lived experience can help researchers identify issues that are important to those affected by a disease or condition, so that real-world issues can be prioritised. Lived experience experts can also inform the wider community about research projects and outcomes. They can help communicate these outcomes to service providers and organisations and lobby for change.


The impact of public involvement on research 

Public involvement can make a positive difference to research, by leading to new insights, increased relevance, and more practical outcomes. It can also make a positive difference in the lives of the people who become involved.


Download the Guide for participants

How you may benefit from being involved in research

People who have been involved in research for many years say that at first, they did not think that they would have anything new to contribute but they knew they wanted to “make a difference”. The benefits of being involved in research may include having a newfound purpose and feeling valued, learning new skills or knowledge, having increased confidence or coping skills, and meeting new people and making new friends.

Find out more about becoming involved in consumer research with the guide developed by the National Institute for Dementia Research, linked here:

Download the Guide (PDF)