What is in a Narrative?

In the August 2025 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. We discussed 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.” There are multiple 'dimensions' where users might seek similarities: gender, relationship roles, dementia type, dementia stage and specific situations and circumstances.

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, we discussed how narratives might address and correct common misconceptions and assumptions.

Authentically telling a story

We discussed the importance of narrators speaking from their own experiences. This can be subtle: for example, one member of the panel expressed discomfort when a narrator (in a caring role) spoke on his partner’s behalf, while another member wanted medical professionals to explain options but to refrain from prescribing decisions.

Given the limited availability of culturally appropriate information and resources, we discussed how, not only is it important to ensure that more resources are provided, but also that existing narratives authentically reflect cultural identity. For example, one member 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? And to what extent do these perceptions depend not just on the content itself, but on the expectations viewers bring?

How the story is delivered

We discussed approaches to narrative production and delivery, particulalry that: i. Slick, highly produced videos may dilute authenticity. ii. Over-editing risks cutting (and trivialising) critical details that people find valuable or even necessary.