Journeying Through Dementia — Part I

Case Study


There was a moment in time not too long ago (2007) where people wouldn’t even consider self-management as a possibility for people living with Dementia.

Academic literature had little to nothing about what it was like for people living with Dementia. When Professor Claire Craig worked as an OT before her career started in research, she saw firsthand that people with dementia had more potential than they were given credit for. She could see that group work, socialising, creative pursuits, and sharing of experiences were more than possible, but advantageous to living with and managing dementia.

In 2007, Claire Craig, Paul Chamberlain and Gail Mountain partnered with the Scottish Dementia Working Group and worked on giving people with Dementia a voice, and to gain the evidence needed by healthcare systems to adopt a change to their approach for managing people living with Dementia. This case study, is the first of 2 (potentially 3rd coming also) that shows where JTD started and how it developed in its early form.

The extent to which the research enquiry introduced a new way of thinking about something or its distinctivness.

When I began the research there was still a very negative perception of what people with dementia could and couldn’t achieve. A huge body of work about self-management in long term conditions existed but people with dementia were excluded from this work.

I wanted to understand why this was so, particularly given that there was a huge political drive around ‘living well with dementia’ with a focus on early diagnosis.

Dementia had been a topic of national and international interest for a number of years, culminating in the G8 Summit which had brought together world leaders to discuss dementia.

In large part this was because of the number of individuals being identified with the condition, about 55 million worldwide with a projected increase to 139 million by 2050.

In addition to the impact of this on the individual, their family and community there were also financial implications for government. In the United Kingdom, for example the estimated cost of care for people with dementia was £34.7 billion with an estimated increase to £94.1 billion in 2040.

Whilst much discussion had taken place about strategies to support and address the issues, I felt that the voices and insights of people with dementia had not been fully heard and I saw a place for design led research in this space.

The thoughTful and systematic way the question was addressed through the research enquiry.

My initial research sought to build understanding of the strengths and needs of people in the initial stages following a dementia diagnosis. I wanted to understand why people with dementia were excluded from self-management programmes.

I was interested to discover whether people with dementia would be able to participate in a community group to help them develop skills, knowledge, and strategies that they could use to help them to navigate the changes that dementia would bring and the role that design might play in this.

If this went well, the follow up research question was to understand what a community based self-management programme might look like and then test it out to see if this is something people with dementia would find acceptable and want to attend.

Dementia significantly impacts on the ability of the individual to communicate verbally. My research methods therefore focused on developing a series of curated creative activities to act as scaffolds for communication so I could ensure that I was meeting individuals where they were at. Previous work undertaken in research, and my experience of practice, gave confidence in the potential of photographs and objects as methods to promote conversation.

Through my research and practice I was in touch with people who were ‘living well’ with dementia. I contacted a number of these individuals who then put me in touch with other people they knew of. Essentially this was a form of snowball sampling. Once I had reached a point where people were telling me what others were telling me and new insights weren’t emerging I then took what had been shared and translated the research themes into a community group self-management programme that my participants named, ‘Journeying through Dementia’.

The initial programme acted as a sacrificial concept. I tested it with a number of groups of people living with dementia. There wasn’t funding to do this so I facilitated it with students and we refined the themes based on the feedback that was given by group members.

The overwhelming feedback from people with dementia was that they did want a programme of this nature. Individuals possessed significant skills and by the time they received a diagnosis they had already been masters of improvisation, problem solving and were using design thinking skills in responding to the challenges they faced. One of the key insights was that not only were people with dementia able to share what mattered, they were also able to offer key insights into how the group should be designed and facilitated.

Individuals did not just want to understand what dementia was, they wanted to develop strategies and approaches to help them to continue to do the things they enjoyed and valued and the pilot groups that were held saw 100% attendance. People wanted to be there and to learn more. Individuals and their families shared the huge impact of the programme on their lives.

The extent to which the work changes thinking or practIce.

Journeying through Dementia is the first design led research enquiry to explore the role of design and creative practice in the implementation of post-diagnostic dementia support. It demonstrated that people with dementia did want to engage in a programme of this nature and the ability of individuals living with the condition to actively shape and re-design their routines and home environment to maximise engagement in valued life roles and activities.

The research was widely disseminated through national and international conference presentations, workshops and webinars.

The programme formed the basis of a Randomised Controlled Trial lead by Professor Gail Mountain in England. In Scotland, the work formed the basis of a series of masterclasses with Allied Health Professionals (AHP) from every Health Board. This was adopted as part of the Scottish Dementia Policy for AHPs in the document Connecting People, Connecting Support.

“Emphasis throughout is placed on ‘doing’ rather than simply talking about strategies and challenges.”

Claire Craig, Co-Director Lab4Living