What is Lived Experience Involvement in Research?

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 new treatments or a cure for dementia, or better care of people who are affected by dementia. It 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.


Potential benefits to research of your involvement

Your value in research is your knowledge, gained through your life experiences. Research benefits from the involvement of lived experience experts like yourself. Involvement in research is different from participation in a research study as a research ‘subject’. It’s not about filling in questionnaires or trialling a new drug. Being ‘involved’ in research means that you work alongside the research team to help deliver research outcomes that are relevant to people who are living with dementia, their care partners and families. It means that the research is performed ‘with’ or ‘by’ people with lived experience rather than the research being ‘on’, ‘about’ or ‘for’ them.


Research benefits from involvement of lived experience experts in a number of ways, including:

  • the important issues to people affected by a disease or condition can be identified
  • real-world issues can be prioritised by researchers
  • lived experience experts can help the wider community to be more informed about research outcomes
  • lived experience experts can help communicate the outcomes of research to service providers and organisations and lobby for change.

The impact of public involvement on research

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


 

Download the Guide for participants

Potential benefits to you of involvement in research

People who have been involved in research for many years say that at first, they didn’t think that they would have anything new to contribute to research, but they knew they wanted to “make a difference”.  People have found that 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)