Journeying Through Dementia — Part II

Case Study

Introduction

Following on from JTD pt 1, this part of the project details how design could play a role in bringing the intervention to life.

At the end of part 1, it was felt that people with dementia could benefit from an intervention, and that the materials and the staff, as well as the location played major roles in effective delivery.

There had been a gap since the first part of the project had concluded, with funding difficult to come by for Lab4Living to continue the work. In this time little service provision had changed, and the number of people diagnosed with Dementia was still increasing, but the context began to shift as an acceptance grew that people with Dementia could do more.

This second phase saw the creation of design led materials, that through an iterative process that included clinicians and designers working with participants, developed an intervention that could exist in a box.

The initial phase of the Journeying through Dementia research established that people living with dementia wanted and benefited from engagement in a community-based group programme.

A large Randomised Controlled Trial had highlighted the challenges experienced by facilitators in implementing the intervention. The second phase of the research therefore focused on the role of design in creating materials to support therapists in delivering groups in the community.

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

Journeying through Dementia was the first design-led research enquiry to explore the role of design and creative practice in the implementation of post-diagnostic dementia support.

Whilst we had good evidence to show that individuals found the programme beneficial one of the challenges was how to support staff in its implementation. This was yet unchartered territory.

It was necessary to create materials that could offer a structure that could support occupational therapists delivering the programme but was not so over-prescriptive to undermine the extensive skills and clinical reasoning that the clinicians possessed.

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

The aim of this element of the enquiry was to build understanding of the requirements of occupational therapists facilitating the Journeying through Dementia intervention in practice.

The design-led research sat within a broader improvement science test and learn methodology. Twenty occupational therapists from older people’s mental health services across Fife and Aberdeenshire participated in four iterative co-design research workshops.

The methodology of exhibition in a box by Chamberlain and Craig (2013) was applied to this study. This is form of object elicitation and was used to curate a series of creative activities (quotes, images, objects) to scaffold thinking and prompt conversation.

After each workshop feedback was collected and analysed and the next iteration of objects and materials were crafted to embody and respond to this feedback.

This culminated in a research informed set of materials. These formed the basis of a series of groups delivered across 2 Health Boards in Scotland.  

Therapists felt that the quality of the final materials were integral to the successful delivery of the programme. The final product had sufficient structure to support the therapists to deliver the intervention but was not so prescriptive and restrictive to prevent the therapists from exercising their clinical reasoning skills and enabling customisation to the context. The materials did this through ‘offering layers of options’. Therapists reflected that the materials communicated important messages about how people with dementia attending groups were valued and helped to counter some of the stigma surrounding dementia.

The extent to which the work changes thinking or practIce.

The Allied Health Professions Lead for Scotland concluded that, ‘Journeying through Dementia has been a key component in the delivery of the dementia strategy for Allied Health Professionals in Scotland. Evaluation of its impact in the first 2 demonstrator sites in Scotland showed that 71% of participants who engaged in the programme reported improved quality of life (QoL-AD)

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

The Journeying through Dementia Programme is a key component of the Dementia Strategy for Allied Health Professionals in Scotland and forms the basis of a number of services. The Inverclyde Health and Social Care Partnership was awarded the Innovation of Year 2022 by Inverclyde Health and Social Care Partnership. Measures of quality of life from across 12 group cohorts showed 100% of participants experienced improved quality of life.  

“I feel we’re helping one another, being on the same wavelength. I have new friends I don’t think I will ever forget.”

Journeying Through Dementia participant