Co‐Developing Awareness Video Campaign for People Living with Dementia with Lewy Bodies

Abstract

AbstractBackgroundAlthough Dementia with Lewy Bodies (DLB) is the second most common form of neurodegenerative dementia, information about DLB is often scarce and fragmented. Corresponding with this, the lived experience of DLB involves high rates of misinformation, social isolation, loneliness, and stigma. There is a need to develop outputs in which the expertise of those living with DLB, care‐partners and clinicians focused on DLB is shared.MethodsFunded by a UKRI Catalyst Award, and after receiving ethical approval from Leeds Beckett University, this project implemented consulting workshops with key informants including: (i) people living with DLB; (ii) care‐partners of those living with DLB; (iii) Third Sector organizations and; (iv) clinicians focused on supporting those with DLB. The consulting workshops discussed the key issues surrounding DLB, from the perspective of the attendees. The outcome of these workshops highlighted the most salient topics for individuals who have recently come into the DLB community (either as a newly diagnosed person or care‐partner).ResultsFindings from the consulting workshops highlight the importance of peer‐support in DLB, including the topics of: hallucinations, sleep and peer‐support. Clinically, the subjects of early diagnoses, Capgras Syndrome and specific care needs were identified as key topics. Six short films are currently being developed based on the findings from the consulting workshops. The Creative Team, Research Team and lived‐experience experts will co‐develop the script for these videos. Each video will be one minute long in duration. The videos will offer a gentle, general introduction to the topic from an expert (mostly with lived experience), with the aim of removing fear and stigma.ConclusionThese videos will offer guidance for shared experiential learning so that the person living with DLB and their CP will be better educated and equipped to support themselves and each other through the care pathway. The solution offered via the Lewy Video Campaign will contributes to improving access to information in an affordable, personable venue, supporting individuals into becoming integrated into the wider DLB community of both clinical and peer‐support.