Stakeholder involvement in dementia research: A qualitative approach with healthy senior citizens and providers of dementia care in Germany

Abstract

Engaging stakeholders in health‐related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group‐specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.

Design and implementation of the participatory German network for translational dementia care research (TaNDem): A mixed‐method study on the perspectives of healthcare providers and dementia researchers in dementia care research

“…These developments have led to an increased demand for healthcare services, which pose new challenges for managing treatment and care. 3 Consequently, the need for studies evaluating the efficacy and effectiveness of treatment options has increased steadily over the last 50 years. However, it became apparent that due to the dominance of researchers and the lack of interaction between researchers and healthcare providers, there was a discrepancy between the dementia research topics that researchers prioritized and those that were needed in practice.…”

“…A German study 3 identified and analyzed research priorities and views on participation in research amongst 31 healthy seniors and 16 family and formal caregivers. Results showed that the main interests of both groups, including early detection of dementia, person‐centred care and the involvement of relatives in research, were largely similar.…”

“… 14 , 15 Despite the list of research priorities in dementia care published by the World Health Organization, which explicitly emphasizes the perspectives of researchers and stakeholders, 16 there is a lack of studies on research priorities in dementia research in the context of country‐specific network structures. 3 To our knowledge, only one study exists in Germany, 3 of which surveyed 16 healthcare providers about their research priorities. Furthermore, the perspective of healthcare providers as a separate group is rarely addressed in existing studies.…”

“…Furthermore, the perspective of healthcare providers as a separate group is rarely addressed in existing studies. 3 Therefore, the evidence around healthcare providers' views needs to be significantly expanded. Furthermore, strategies are required to enable sustainable cooperation in a national context because various research results 17 , 18 , 19 , 20 , 21 , 22 show that measures for better coordination of dementia care can be a meaningful instrument in healthcare and can sustainably improve the health and well‐being of those affected.…”

Participation of older people in learning studies

“…Aside from participation roles, throughout history older people's learning has been studied from the viewpoint of stakeholders such as doctors or family members. Therefore, the nonparticipant role is based on practical reasons, e.g., to have easier access to stakeholders compared to older people themselves (Weil et al, 2017), or beliefs that older people are not capable of sharing their own views because of illnesses such as dementia (Kowe et al, 2020).…”