InsideStory: Dementia Diaries

Steve Milton, Director of Innovations in Dementia talks to Radar on why there is no definitive “the dementia experience"

“None of the diarists would claim to be experts in anyone else’s dementia”

Steve Milton, Director of Innovations in Dementia, who manages the Dementia Diaries project talks to Radar about why there is no definitive “the dementia experience”

People living with complex health conditions often report challenges with self-confidence and a lack of conviction in the potential for progress, as well as practical issues due to reductions in capacity and connectivity. Which of these are at play within the dementia community and how is Dementia Diaries working to mitigate these?

Well, there’s two that immediately jump out to me as highly pertinent. That’s self esteem, or confidence, and connectivity. When people receive a diagnosis, there is certainly a large issue surrounding identity, how people fit into their close network, friends and family, and into the broader social sphere. It is common for people, at the start, have issues with self esteem and confidence.

It’s about validation, really, and being able to express yourself, having a vehicle to explore your own experiences, and your own ideas. We’re seeing feedback increasingly on our Facebook page, in the comments. There was a lovely letter from one of the transcribers, just about how listening to people talk about their personal issues had helped her to understand dementia; it had inspired her during a period of her life which was very difficult. It’s very important, also, for diarists who might think that they’ve lost agency, whose self esteem is much lower, that the diary is just solipsistic navel-gazing… this was good feedback for them. We had a response from one regular diarist which essentially showed that this was the case.

As for connectivity, it breaks down into two issues – there’s a technical issue, and there’s a social issue. The technical issue, from my perspective as an “upload grunt”, is mainly that as we see mobile traffic increase the recording quality seems to have dropped off somewhat. This is a slight issue; we receive diary entries via mobile, landline, and (specialised handsets provided by) OwnFone.

The social issue, social connectivity, is much more important. From research into DEEP (the Dementia Engagement and Empowerment Project), we’ve found that people, participants, feel a strong sense of connectivity with other participants even though they haven’t necessarily met them. There’s a powerful drive there that they feel part of something bigger. There hasn’t been any of this research into diarists during my time at the project, but I’d imagine the sense of connectivity is comparable. Diarists do respond to each other’s diaries. There was one support group – the Zoomettes, a virtual women’s group, they meet regularly – and one of the diarists in that group has said they consider it their main source of support. Bar none, beyond family. And we’re looking at starting a similar men’s group. Facilities like this, which enable diarists to meet face-to-face, provide a sort of flesh and bone for unspoken communities like this.

What is the role of caregivers and advocacy groups in individual diarists’ stories?

I have to preface this with a reminder: Dementia Diaries is a project for people with dementia. The voices of carers are important, but they aren’t what the project is about. Having said that, and regarding the group diaries, the role of facilitator is very important. You know, sometimes the facilitator in these groups has been a person with dementia, there’s at least one case of a support group where the facilitator does have dementia. Whether they’re full-time or part-time I’m not sure. In some DEEP groups, it’s not immediately apparent who the facilitator is. They avoid that sort of binary relationship, the space isn’t hierarchical. Of course, in some groups it works better than others. One regular diarist recently explained that they were the only person in their dementia walking group who actually had dementia.

In many individual diaries, you can hear caregivers in the background in supportive roles. One diarist’s partner gently prompts them when they need it, it’s things like this that remind you how skilled carers are. Even when their own perspectives run counter to their partner’s narratives.

Does lived experience pass through a sort of lens when  it is received as part of a collective insight, from within a dementia group, rather than directly from an individual?

My personal view is that there is no such thing as a “collective voice”. The concept of a significant group, it could be as few as six people, with the only thing they have in common being that they’ve been diagnosed with dementia, as a “collective voice” is absurd. That’s why we use the phrase “dementia voices” rather than “dementia voice”.

I’m increasingly wary of focus group work, not when exploration of ideas is involved, but when people are asked to make binary choices. This isn’t dementia-specific: high levels of heterogeneity are recorded between groups of this kind, but you often see very similar responses within groups, with spoken exercises. When we triangulated that data with people’s written submissions, in one particular exercise, the written responses we received were strikingly different to the verbal responses. Not necessarily peer pressure; more peer leading. There’s definitely room for methodological improvement.

With regard to group diaries, they do differ from individual diaries. Individual diaries are more stream-of-consciousness, more immediate. Group diaries tend to be more like, “Hello, my name’s Steve! The weather’s nice here,” you know, it’s more generalised, less personal. Specific cases, specific issues that diarists respond to will be more intrinsic, but you’re still collating five or six different experiences at the end of the day. But the idea of a “collective voice” – other than in using discussion to talk through an issue – is one that, personally, I find to be very problematic. It contrasts with the entire point of the project, to provide a platform for distinct experiences.

When Leeds Beckett University evaluated the project they found that the first-person narratives played a significant role in developing public awareness of dementia. Should lived experience take priority over more impersonal, clinical narratives?

You’ve probably come across the statement, “once you’ve met one person with dementia, you’ve met one person with dementia”, The danger of listening to a single voice is that public policy and perceptions can be formed by something which is, by definition, unrepresentative. It’s when you look at this that you see the power in the sheer volume of voices in Dementia Diaries. There’s always a role for narratives, for meta-narratives really, which take on board the largest possible range of voices and experiences. There’s clearly a role for clinical narratives as well. I think an often overlooked point is that none of the diarists would claim to be experts in anyone else’s dementia.

That said, it is often easier to change hearts and minds with a story than with statistics. It does depend on the medium, and it does depend on the audience. I remember speaking at an event for the Welsh Government, and at the end of some very detailed statistical analysis – you know, gold standard, double blind, placebo-controlled, randomised trials – I contrasted that with video footage of myself and a man with dementia playing golf. A minister approached me afterwards and said her mind had been changed more by the video than by the statistics.

But there is room for both narratives. Both are important; we neglect either at our peril, which is why Dementia Voices and Dementia Diaries are such powerful ideas. The issue of an “accurate representation” of dementia is, in itself, problematic. That’s why the volume of diaries is so large – there is no definitive “the dementia experience”, just like there is no “the human experience”. If you want to talk about “the human experience”, take your pick!