Introduction
Pathway to involvement in dementia research
This pathway is for people living with dementia, carers, and community members who are new to dementia research; and are interested in finding out how they can be involved. However, it may also be useful if you already have some experience.
In this section, we explain what 'involvement' is, share simple resources to help you understand it, and introduce key terms.
What is research involvement?
This is when people who have lived with a disease or health condition, or cared for someone with one, work together with researchers. They share what they know and what matters to them. Together, they identify problems, think about new ideas, and decide what the research should focus on. They also help make decisions about how research should be carried out, and how findings can best be shared.
To learn more about what research, and research involvement are, see Dementia Australia's short videos:
'Meaningful involvement' means researchers:
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Talk openly and honestly about the research and what has already been decided
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Listen to peoples' needs, concerns, and ideas
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Making decisions and taking action together, where possible.
Why it matters:
Meaningful involvement can help:
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Make sure what is researched, and how the research is done are based on people's needs. This makes it more relevant and impactful
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Build trust in organisations