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.

Detail of a dementia carer’s experience map, showing their thoughts and feelings about care and their interactions with health and social care services.

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.

Detail of an informal carer’s handmade journey map.

A carer’s reflection on his parent’s gradual, unseen cognitive decline.

2. Visualising their experiencesI wanted to help carers reflect on their experiences and relate them to others. I also wanted to do this in a way that drew attention rather than, for example, a written report which can be easily ignored. After several iterations I developed a visual notation system to help carers build detailed accounts of their experiences and their interactions with dementia services.

The key used for each timeline

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.

A very positive experience with a local authority associated with a negative experience with the NHS

A positive experience with Newcastle Carers associated with an extremely negative personal experience

A factual event (diagnosis) associated with both positive and slightly negative experiences with a local authority

Combining multiple data points to create a detailed timeline

Insights

Each carer’s experience was unique, but there were some common threads throughout this research.

01. Incomplete information sharingEvery time a new service became involved, carers were concerned that vital details were not being passed on. They felt significant pressure to give complete case histories and personal backgrounds, and felt guilty when they missed out something significant. This was an onerous burden during crises. Carers wished for greater consistency in the information shared between services.

02. Inconsistent referralsIn all cases, the carers had established relationships with their GPs and spoke with them at an early stage. They understood that the GP would help them in some way, even if they did not know exactly what this help would look like. Most carers were not referred to specialist support services and were instead left to cope alone. This led to them feeling marginalised, unable to ask for help, and contributed to even greater crises in the future.

03. A lack of clarityCarers’ experiences of local authority interventions were largely negative. Having only limited past experience with social workers, carers came to associate them with unwanted outcomes such as care home placements. This lack of clarity led to carers delaying action, fearful of losing control.

04. Not always fire-fightingThe timelines show distinct periods of crisis where they needed a lot of support. Unexpectedly, they also show long periods of relative calm where life was going on as normal. These quiet periods offer an opportunity to help carers without focusing on an immediate problem. For example, they could be used to train carers, improve on their own health and wellbeing, or focus on strengthening their social ties.

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.

Network Delivery Lead (Older People’s Mental Health and Dementia), Northern England Clinical Network:

“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.”

The finished timelines contributed to successful funding bids by Newcastle Carers, who presented them as clear evidence of Newcastle Carers’ positive impact not just on individual carers, but as part of the wider journey through dementia services.

Newcastle Carers CEO -

“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.”

Carers described the process itself as cathartic and a valuable opportunity to reflect on how far they had come.

“David”, a carer and participant

“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.”