What is in a Narrative?

In our most recent Lived Experience Advisory Panel (LEAP) workshop we discussed the value of dementia narratives. How they can offer support and which features will provide impact. We have broken down what we learnt into four parts. We'll discuss the content itself (what the narratives are about), who the narratives are for, who’s telling them, and how they’re delivered. As we dig into each of these we found that there are a wide set of considerations related to the content, the viewer and the delivery of a narrative.

What the stories are about

This was our “take a step back” question. When and how might narratives be helpful? We discussed narratives that do different jobs at different moments. They fit into four different categories:

1. Informational : narratives covering options, services, and stages of the disease.

2. Educational : correcting myths and widening public understanding.

3. Shared-experience : lived stories that build reassurance, empathy, and trust.

4. Hope-oriented : highlighting positive experiences, ongoing interests, and quality of life.

Narratives can, of course, contain a mix of the above. Perhaps the primary purpose of “shared-experience” narratives is to reaffirm a sense that “it’s not just me,” and “I’m not alone.” We expect that these narratives will resonate more strongly when they closely resemble a viewer’s own experiences. There are multiple 'dimensions' where users might seek similarities: gender, relationship roles, dementia type, dementia stage and specific situations and circumstances. Irrespective of the challenge of appropriately matching user intent to a narrative, it also suggests that our library of 'similar experience' narratives will need to be broad and deep.

Who the stories are for

The beneficiaries of the LEND project are people living with dementia and their carers but the consumers of narratives will cover a broader range of people. We learned how common misconceptions of dementia (from a lack of appreciation of different stages, to simplistic assumptions about types and impacts of symptoms, and views about the ages and abilities of people living with dementia) can result in uncomfortable, patronising, or even harmful interactions and exchanges. By delivering narratives to, for example: extended family members, friends, wider support networks, and even the general public, narratives might address and correct common misconceptions and assumptions. This may, in turn, benefit people directly affected by dementia.

Authentically telling a story

This is a lesson we’ve already seen in similar projects: authenticity matters. Participants expect narrators to speak from their own experiences, and were quick to notice when this is not the case. This can be subtle: for example, one participant disliked it when a narrator (in a caring role) spoke on his partner’s behalf, while another wanted medical professionals to explain options but to refrain from prescribing decisions (they don’t know my situation).

Given the limited availability of culturally appropriate information and resources, not only is it important to ensure that more resources are provided, but also that existing narratives authentically reflect cultural identity. For example, one participant questioned why, in one narrative, a person's culture was discussed through an outsider perspective (her partner's) rather than conveyed directly.

So - a few questions remain. Is authenticity equally important across all types of narrative, or does it matter most when viewers are looking for stories that reflect their own experiences? In those cases, are they more sensitive to anything that feels inauthentic? And to what extent do these perceptions depend not just on the content itself, but on the expectations viewers bring? After all, a story may authentically represent the narrator’s experience, yet still feel inauthentic to a viewer if it doesn’t align closely with their own.

How the story is delivered

Production choices matter. We'd like to dig into this a little more in a later session but a few observations so far: i. Slick, highly produced videos may dilute authenticity. ii. Over-editing risks cutting (and trivialising) critical details that people find valuable or even necessary. iii. We must consider and evaluate other delivery approaches: while our prototype used video only, preferences varied: one participant wanted audio-only (and refused to engage with our prototype because of this); another discussed the potential of animation.

In short: narratives that support people living with dementia and their carers have a broad scope, a potentially wide audience and a wide range of needs. When designing an intervention, should we align retrieval and delivery approaches with narrative type, given the different purposes of each?