When we started evaluating Knowledge is Power, we thought we were evaluating a booklet.
In one sense, that’s exactly what we did. We asked people what they thought of the different versions of Knowledge is Power. We wanted to know whether people found it useful, whether they understood it, and whether it made any difference to their lives.
The answers were overwhelmingly positive.
People told us the booklet helped them understand what support was available, gave them practical ideas, helped them feel less alone and, perhaps most importantly, gave them hope.
Many described returning to it time and again as different questions and challenges arose.
This is what we were hoping to hear of course.
But by the end of the evaluation, I found myself thinking that the most interesting finding wasn’t actually about the booklet at all.
It was about how it was made, and why it was made in that way.
More than a badge
These days, almost every organisation talks about co-production. It’s become part of the language of health and social care. That’s a good thing. It reflects a growing recognition that people with lived experience should be involved in shaping services and resources.
But sometimes I wonder whether we’ve become a bit casual about what co-production really means.
Too often, involvement can mean asking people to comment on something that has already been written. Or inviting a few people to a consultation event once most of the decisions have already been made.
What struck me about the evaluation was that readers seemed to be saying something much stronger.
When we asked how important it was that Knowledge is Power had been created by people with lived experience, mainly people with dementia , the response was remarkable. People rated its importance extremely highly. More importantly, when they explained why, they didn’t talk about fairness or representation. They talked about trust.
Readers told us they felt the guidance was more authentic because it was written by people who genuinely understood dementia. It felt more practical. More relevant. More human.
In other words, co-production wasn’t simply making the resource more inclusive. It was making it better.
Lived experience is expertise
One of the things that still surprises me is how often lived experience is treated as something different from expertise.
In dementia care, we rightly value professional knowledge. We need clinicians, researchers, social workers and support workers. Their expertise matters enormously.
But the evaluation reminded me that there is another kind of expertise too.
People living with dementia know what it feels like to receive a diagnosis. They know what information is helpful and what information simply adds to the confusion. They know what creates hope and what creates fear.
They know what helps people navigate everyday life.
Information is about more than information
One of the strongest messages from the evaluation was that people weren’t simply using Knowledge is Power to learn facts.
They were using it to make sense of what was happening to them.
Some people used it to explain dementia to family and friends. Others used it to find support groups, apply for benefits, plan for the future or understand services. Many described feeling more confident and reassured after reading it.
That feels important.
Sometimes we treat information as if it is a neutral thing. A leaflet. A booklet. A website.
But good information can do much more than inform.
It can help people feel understood.
It can help them feel less alone.
It can encourage action.
It can give people confidence at a time when life feels uncertain.
A challenge for all of us
The findings raise an important question for anyone producing information, whether that’s in the NHS, local authorities, charities and community organisations.
As well as asking :
“Is this accurate?”
we should also ask:
“Who helped us create it?”
“Whose voice is missing?”
“Does it reflect real life?”
“Does it offer hope as well as facts?”
“Will people see themselves in it?”
Those questions matter because information isn’t just about transferring knowledge. It’s about helping people live well.
Looking ahead
For me, the biggest lesson from the evaluation is a simple one.
People with dementia are not simply recipients of information and services. They are contributors, educators and experts in their own right.
The success of Knowledge is Power doesn’t come only from what is written on the page. It comes from the fact that the people the booklet is trying to support helped create it in the first place.
That may sound obvious, but it is still surprisingly rare.
If we genuinely want information, services and support that work for people with dementia, perhaps the best place to start is not by asking what we should tell them.
It’s by asking what they want to tell us.
To see a copy of the key findings of our evaluation click here
To read more and download our Knowledge is Power publications click here
Steve Milton
Co-director, Innovations in Dementia