Exploring the perceptions and needs of Deaf communities in Austria, Germany, and Greece for developing culturally and linguistically appropriate dementia training courses

Abstract

Background Deaf individuals continue to face complex challenges in both accessing healthcare and obtaining information about dementia. Despite this, research into their perceptions of dementia and the need of tailored awareness programs remains limited. In response, a dementia awareness program specially designed for Deaf communities is being developed as part of the Erasmus+ project “DeSign”. Objective This study provides the groundwork for that initiative by exploring (a) what Deaf individuals in Austria, Germany, and Greece know and how they perceive dementia, (b) the current challenges in accessing information and healthcare, and (c) their preferences for the design of specialized, accessible dementia awareness courses. Methods Six semi-structured focus groups (two per country) were held in the respective national sign languages with 4–14 Deaf participants, including dementia experts, family caregivers, and general community members. Data were analyzed using inductive content analysis. Results Deaf participants from the general population demonstrated significant gaps in dementia knowledge, including misconceptions about early signs, causes, and risk factors. Dementia-related information in sign language was described as nearly non-existent. Participants highlighted the need for tailored awareness courses, covering dementia basics, as well as information on available specialized healthcare services and resources in their country. The preferred format for such a course should be delivered in sign language and incorporate culturally appropriate methods of information sharing. Conclusions Tailored awareness courses in sign language are crucial to address knowledge gaps and improve access to information for Deaf communities. This study provides the groundwork for developing such courses within the Erasmus+ project. *DeSign: Raising Awareness for Dementia in Deaf Older Adults in Europe