Lewy Body Dementia: Two Case Studies of Arts-Based Knowledge Translation and Public and Patient Involvement Initiatives

Abstract Background Lewy body dementia (LBD) – the second most prevalent form of dementia after Alzheimer’s dementia – is “the most common form of dementia no-one has heard about”. Indeed, it is often misdiagnosed as other conditions which it mimics by sharing overlapping symptoms, earning its status as the “chameleon of dementias”. Hence, knowledge translation (KT) and public and patient involvement (PPI) initiatives which raise awareness of LBD and provide a space for those impacted by it to come together are urgently needed. Methods Two arts-based initiatives were undertaken. The first involved people with dementia coming together in storytelling groups with an object that was special to them and sharing the story behind it to an audience of their peers. This process was documented by a photographer, a poet, and a professor of clinical nursing. The second initiative involved the development and piloting of a novel applied drama workshop for dementia carers. This was created and facilitated by performers in collaboration with the community and education stream of a national theatre and a professor of drama. Results The output of the first project was compiled in a book which featured portraits of people with dementia alongside their special objects and accompanying stories. This was exhibited during Creative Brain Week. A post-workshop questionnaire was completed by participants of the drama workshop and the workshop was revised to reflect the learnings from the pilot. Conclusion PPI and KT initiatives are essential to raise awareness of dementia. They also offer people with lived experience of dementia an outlet to engage meaningfully in the community, often with the added benefit of reducing social isolation – a risk factor of worsening dementia. Presented here are two case studies intended to offer inspiration to those working in the dementia field who may wish to include similar arts-based outreach initiatives alongside their own research practice.