Remapping Dementia

What if dementia were a physical space? Could people navigate a literal landscape more effectively than an abstract one? This promoted early planning and agency for service users while encouraging collaboration between dementia service providers.

The Dementia Landscape for Stockton-on-Tees

Context

This project was a collaboration with the Northern England Dementia Advisory Group (NEDAG). Following the success of the Department of Care exhibition and Dementia carer experience timelines projects, we wanted to explore new ways to encourage dementia service users in early-stage planning of their own care. NEDAG identified Stockton-on-Tees and North Tyneside as potential locations for this research - each sharing similar size and demographics, but with differing approaches to dementia service provision.

Project overview

Designed and facilitated workshops with service providers, people experiencing dementia, and informal carers (family and friends)
Co-designed large-scale artefacts to help people navigate through this complex and unfamiliar space
Synthesised research across two locations in North East England
Presentations, updates, and next-step planning for stakeholders
Presented this research at Design for Next and the House of Lords

Starting with dementia service users

I designed and led exploratory workshops with people experiencing dementia and their informal carers (typically family members). We focused on their lives before diagnosis, their personal goals, and how they wanted their lives to progress. We collectively agreed that their goals fit into the following broad categories:

Being happy, healthy, and useful
Feeling heard
Planning ahead
Knowing their legal rights
Living a life away from the diagnosis
Feeling able to cope in a crisis

There was an interesting tension between these abstract goals and the service providers’ focus on specific and measurable outcomes. Together with the service users, we created 2 distinct ways of visualising their paths through dementia.

Version 1: Dementia as a transit map. If each service were a stop on their way to their goal, could that help people to decide the best routes to take?

Version 2: Dementia as a geographic map. An island filled with dangers and opportunities, as well as common issues such as finding legal advice and funding care home placements

Involving dementia service providers

I arranged further workshops for service providers to populate each maps with the specific interventions they offered. Some organisations offered only 1 or 2 interventions, while others (such as the NHS) offered a vast array of different interventions which took up large areas of each map.

Once the draft maps were complete, we used the workshop sessions to reflect on the process and outcomes, identifying gaps and overlaps in local services. The sheer number of different service interventions made the transit map visually overwhelming, and its linear nature didn’t accurately reflect service user experiences. We decided that it wasn’t the most suitable visual metaphor for this context and abandoned that approach at this stage.

Stockton participants working on their transit map

A draft transit map. The overwhelming amount of information led us to abandon this approach and focus solely on the geographic map

Expanding on the geographic map approach

This visualisation better suited the idea of user-led exploration and highly individual journeys. Many of the locations on this map were deliberately ambiguous - for example, “The Reservior of Communal Experience”, “Quicksand of Fear”, and “Happy Trails” are all open to interpretation. I wanted to challenge service providers to reflect on themselves in terms of the abstract goals favoured by service users, instead of siloing themselves in specific areas of the map.

Once we finished the draft maps, I created large-scale versions to display in Stockton LiveWell Dementia Hub and Jarrett’s Coffee Shop in North Tyneside. Jarrett’s shared a building with Age UK and was a social hub for people with dementia and their families, making it an appropriate venue for an experimental approach of this kind.

Stockton participants working on their geographical map

A geographical map in progress, showing some of Stockton-on-Tees’ interventions around diagnosis

Detail showing some interventions around challenging the stigma around dementia

Examples of interventions focusing on keeping people physically and mentally active

Examples of interventions focusing on life away from caring

Using the map

The maps helped dementia service users to explore their potential different pathways and the services that might help them along the way. They more accurately reflected the lived experiences of individuals who described their experiences with dementia as a physical journey - a “long a difficult road” where they felt “lost” or “trapped” as they took “wrong turns”.

“Maps give their readers the simple and magical ability to see beyond the horizon” (Fawcett-Tang, 2008) and this approach, based on a mental rather than physical environment, helped people to see beyond their own limited experience, situate themselves within an existing landscape, and plan their next steps.

Rather than replace face-to-face conversations between services and users, the maps helped to frame those discussions by supporting users to articulate their needs and choose between different approaches. This supported more equitable conversations around current needs and future planning. The real value of the map was demonstrated when they felt able to point to a particular service and ask “and what about this?” instead of feeling pushed through a landscape without any wider context.

Feedback from a dementia carer in Stockton-on-Tees:

“It’s reassuring, you tend to think you’re the only two folk in the world with this drama in your life - and it’s different, everyone is different. You don’t have to follow it 1-2-3-4-5, you can just pick up the bits you need to cope with at any one time. Folks can look at this and see what they want to tackle first...[it gives] a sense of where they want to start on the journey.”

For service providers, the real value of the exercise lay in the process of redescribing their services around user goals, and by helping them to better understand the wider landscape in which they operate. In both Stockton-on-Tees and North Tyneside, for example, community wellbeing services recognised that they were providing largely the same service and began discussing how to collaborate on resources and expertise.

Comparing the lived and ideal pathways of an informal carer in Stockton-on-Tees (details and annotations removed)

Comparing the lived and ideal pathways of a person experiencing dementia in Stockton-on-Tees (details and annotations removed)

Limitations

As expected from an experimental project, each map had a limited lifespan. As old interventions expired and new ones appeared, the printed maps became obsolete - snapshots of a point in time. This temporal challenge might be addressed through funding to provide periodic updates or digital equivalents. Looking back over this project, I feel that value was in the process rather than the end product.