Free from fear. Reframing Dementia through the Eyes of Caregivers.

Three out of four people in Switzerland fear dementia more than any other health condition of old age. This fear is, at least in part, due to dementia advocacy actions and awareness campaigns of the last decades. Widespread fear is undoubtedly a sign of awareness in a society that up to the ’60s did not even include the term “dementia” in its daily vocabulary. This project stems from the recognition that if people are more aware of dementia, they are not necessarily more knowledgeable. The term is denigratory, and dementia has negative connotations and narratives, including that individuals who live with dementia are “no longer themselves.” Caregivers of persons with dementia (PwD) refrain from discussing about dementia with those who do not have lived experience of dementia because they fear to be misunderstood. In our research we listened to diverse caregivers' voices, offering not only negative, but also positive and realistic insights into living with a PwD. Caregiving is burdensome but it is also a journey that allows caregivers to become uniquely knowledgeable about dementia and the caregiving experience. This wealth of experience can contribute to reframe current collective beliefs and perceptions of dementia, and a picture that has been for long blurred and doomy.

The aim of this Agora project is to reframe the social meaning of dementia by promoting a trialogue on the experiential knowledge of dementia between researchers and healthcare professionals, caregivers, and citizens in Switzerland. We intend to give dignity to the complexity of dementia experience. Our goal is to fill a knowledge and emotional gap enabling enduring and fruitful exchanges. We will leverage the results of iSupport Swiss, an articulated research project planned to end in March 2023. iSupport is the World Health Organization evidence-based self-help intervention targeting caregivers of PwD. It is a complex intervention which formal evaluation requires crucial preliminary steps, including cultural adaptation, and feasibility, acceptability, and usability testing. We conducted our research with dementia caregivers and relevant stakeholders. Final versions of iSupport culturally adapted to Switzerland are available in Italian, French, and German in paper version, and as a digital health tool for both mobile devices and desktops. This Agora has two objectives: to improve the knowledge about dementia in the public based on the evidence-based content of iSupport Swiss, and to nurture an enduring dialogue between caregivers, researchers and the public about their experiences, beliefs, fears, and expectations about dementia.

Based on the content and five-module structure of iSupport Swiss, we will co-design “iSupport pillows” together with caregivers of people with dementia, five animated videos subtitled in Italian, French, German, and English. Caregivers will deliver the evidence-based iSupport Swiss dementia contents leveraging and accounting for their lived experiences. Next, the five videos will be the starting point of five respective workshops called “Living room” involving different stakeholders and the community in Ticino. A final wrap up video will summarize the most important elements of this Agora. We will use digital channels and social media to disseminate widely the five videos, the recordings of the five workshops, and the content, structure, purposes, and uses of iSupport Swiss.

We ground the project and the proposed activities on a long-lasting collaboration. We build on the established advisory board of the iSupport Swiss project whose members are relevant stakeholders of local older adults, dementia, institutional, and lay public organizations. We will further disseminate the outcomes of this project through the WHO iSupport global network, favoring knowledge and experience exchanges, and expanding reach and accessibility to the five videos, and the trialogic model that allows centering them on caregivers' experiences and perspectives.