Dementia Crowd Research
The knowledge that families and carers build up over years is rarely written down — and too often it is lost. Dementia Crowd Research is being built to gather that experience, and to let it help shape the questions research asks next.
A forthcoming initiative from Dr Philip McMillan.
The people closest to dementia see the most
Carers work out how to handle the hardest days by living them — small, practical discoveries about what helps and what makes things worse. That understanding is real expertise. When the caring ends, it usually disappears with it.
The people beside someone with dementia, day after day, often notice patterns long before anyone else does. Gathered across many families, those observations could point research toward questions that matter — questions that might otherwise be missed.
Three things this will do
Gather
Capture the practical knowledge of carers, families, and people living with dementia — before it is lost.
Compare
Let people see how their experience sits alongside others in a similar situation, and what others found helped.
Direct research
Turn the patterns across many experiences into clear questions for researchers to investigate.
The kinds of experience we will gather
When it opens, contributions will be organised into focused areas — each one a part of the caring experience worth understanding. A first look at what those will cover:
Nothing here promises a cure or a fix. We gather what people notice and what helps — and treat it as questions for research, not as answers.
The crowd raises the questions. Research answers them.
What thousands of people notice is where new questions come from. Gathered carefully, those signals can help direct research and inform better, more compassionate care.
- Patterns emerge across many families
- Questions are shared with researchers and clinicians
- Findings are reported back in plain language
- What people notice shapes what is asked next
What people share generates questions to investigate. On its own it does not prove anything — and we will not present it as if it does.
Not open yet — but not far off
Dementia Crowd Research is in active development. We are not gathering contributions or opening membership yet. This page is a first look at what is coming.