Living with Dementia
As designer-in-residence at Newcastle Carers, I used person-centred research to help service providers understand the complex experiences of informal dementia carers.
Context
Newcastle Carers is an incredible charity offering help to anyone providing unpaid care for someone else. These “informal carers” often feel crushed by the weight of 24/7 responsibility, marginalised in care planning, and left to cope without financial or emotional support. I wanted to highlight their experiences and help health and social care providers to:- better understand the lived experiences of caring for a person who is experiencing dementia
- see what their services look like to people during a crisis
- identify specific pain points in their journeys
- highlight opportunities to give carers support and training
- draw attention to this marganialised group of people to open space for discussion and collaboration
Project overview
- Individual semi-structured interviews with 10 informal carers
- Thematic analysis of interview transcripts, cross-referenced with quantitative data sources
- Developed a novel, large-scale visual notation system
- Co-design sessions with carers to create bespoke, large-scale experience timelines
- Leveraged the findings to develop a collaboration with dementia health and social care providers
- Presented the timelines at ServDes and the House of Lords
- The complete archive of timelines can be found here
The process
1. Semi-structured interviewsThis is my favoured route into qualitative research as it helps to establish trust and identifies what is most important to them. The carers told me how their lives had changed, their hopes and fears for the future, and their experiences with health and social care services. I created a draft handmade map during each interview, focusing on their emotional experiences along with a timeline of the underlying factual events.Key findings
- Their experiences were much more complex and longer-lasting than I expected. Carers talked about the emotional strain of seeing a gradual cognitive decline over many years, the sadness and relief that came with a diagnosis, and the strain of reacting to repeated crises.
- The carers rarely described their experiences with health and social care services as unambiguously good or bad. Exploring the reasons for this gave me a more rounded understanding of what they valued in a service.
I used the interview transcripts to create a prototype timeline for each carer. I then invited the carers to a follow-up workshop where they rated the significance of each interaction using a Likert scale.
Assigning values to each positive and negative interaction helped the carers to highlight specific elements of a service that worked for them.
Insights
Each carer’s experience was unique, but there were some common threads throughout this research.Impact
I presented the timelines to local authorities and dementia service providers across the region, advocating for informal carers as a critical part of dementia service provision.The wealth of detail in each timeline meant they grew to huge sizes (the largest was just over 9 metres long, covered a decade of full-time care).This scale helped draw attention to these previous marginalised experiences and opened up space for discussions about the hidden value of carers and how we might support them better. This led to the Department of Care and Remapping Dementia projects.“I thought they were excellent. I thought it gave a really intuitive way of understanding the impact through the eyes of the carers...taking the perspective from an individual’s point of view rather than an organisational [one]. I think it was really powerful in showing how things interact with each other. And then I think we saw a chance to do something a bit different.”
“I thought it was really useful because for me, personally I work much better with images and pictures. Give me reams of text to read and it will just turn me off like that. So I thought it was a really useful, insightful way to understand the journey that carers are on. I’ve never seen it done that way.”
“It looks great, you can really see where the bad times were and when Newcastle Carers came along and it started to get better. And it ends on a high note with it should do because I do feel okay about it since I got the right help. Just talking about it has been very good for me, I think.”