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

Abstract

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