Coexistence or cooperation? The perspective of people affected by dementia on participation and research‐ a TaNDem study –

• DOI: 10.1002/alz.063037
• Publication Date: 2023-06-16T10:01:51Z
• Authors: Stefanie Köhler; Annelie Scharf; Anika Raedke; Marie Marleen Hep...; Martina Roes; Bernhard Michalowsky; Wolfgang Hoffmann; Stefan Teipel
• Keywords: Embarrassment

Abstract Background So far, health services research in dementia has yet led to insufficient transfer of evidence into healthcare practice or implementation patient and caregiver perspective the design studies. A strong transdisciplinary network people with dementia, relatives, researchers, service providers is needed improve speed up interaction between these stakeholders. Here, we aimed integrate caregivers on establishment a translational for (TaNDem, funded by Federal Ministry Education Research). Methods We interviewed four (mean age: 76.0 years; mean MMSE: 25.5) 16 family (15 single interviews, one pair; 62.6 years). asked participants about their priorities expectations motivation participate projects networks. The interviews were transcribed analyzed using qualitative content analysis, according Mayring. Results Most interviewees lacked an idea how researchers work. They could only imagine participating as consultant, but not co‐researchers decision‐making power. Participants afraid knowledge gaps embarrassment presence researchers. However, was perceived essential prevent treat future affected ones. elicit five areas interest that should be addressed network: pathogenic themes (e.g., early disease detection; prevention), communication & arrangement finding support supply), specific care (specialized staff facilities), offers (self‐help; case management) tasks policy (plan supply capacities; solve shortage staff). Conclusion identified contrasted self‐perceived focus topics. Research must evolve become more tangible, visible, understandable relatives so they can actively long‐term basis projects. need management culture participation reach supply, support, research.