Human Rights Award for Siegen's Dementia Advisory Boards
At the awards ceremony in Munich (from left to right): Prof. Dr. Christoph Ellßel (Catholic University of Munich), Prof. Dr. Constanze Giese (Catholic University of Munich), Prof. Dr. Andreas Frewer (FAU Erlangen-Nuremberg), Celina Sander (University of Siegen), Dr. Caroline Emmer De Albuquerque Green (University of Oxford and member of the Josef and Luise Kraft Foundation), Dr. Harald Mosler (Executive Director of the Josef and Luise Kraft Foundation).
Research should not only be about people with dementia and their caregivers, but should be shaped together with them. This is the guiding principle of dementia research at the Chair of Psychological Research on Aging at the University of Siegen. Together with the Alzheimer’s Association of Siegen-Wittgenstein, the researchers have established two dementia advisory boards: These boards offer people with dementia and their families the opportunity to actively contribute their experiences and perspectives to research and care. Celina Sander, a research assistant in the Department of Psychological Aging Research, and Stefanie Kremer of the Alzheimer’s Association Siegen-Wittgenstein have now been honored for their work with the dementia advisory boards: The Josef and Luise Kraft Foundation has awarded them the “Prize for Human Rights and Ethics in Medicine for Older Adults.” The prize, worth 3,000 euros, was presented during a ceremony in Munich.
“It is very important to us not only to incorporate the perspectives of people with dementia and those who care for them into our research, but also to highlight them in public discourse. That is why we are all the more delighted to receive this award,” said Celina Sander, who has been working with the two advisory boards on a monthly basis on behalf of the University of Siegen for several years. The award is intended to recognize all members of the two advisory boards.
The “Advisory Board for People with Dementia” and the “Advisory Board for Relatives and Caregivers of People with Dementia” emerged from research projects at the University of Siegen. The initial goal was to investigate how people with dementia and their family members could be involved in research projects. In addition, researchers examined how active participation in research projects affects people’s life satisfaction and perceived self-efficacy.
The participatory approach developed in this way was subsequently continued and established as a permanent structure within the research work of the Psychological Aging Research program. One result of the advisory boards’ work is, among other things, the recently published third edition of a guide on the topic of “Communication in Dementia.” People with dementia and their family members were directly involved in its creation: they contributed numerous experiences and recommendations drawn from their own daily lives with dementia. The guide combines these with current research findings, thereby offering a wide range of background information and practical assistance on the topic of communication for people with dementia, their family members, and caregivers.
“By recognizing people with dementia as active contributors to research and care, the dementia advisory boards make an important contribution to promoting human rights and strengthening the right to participation and self-determination,” says Celina Sander. Research questions and care services could thus be better aligned with the actual needs of the target group.
The Josef and Luise Kraft Foundation is committed to promoting human rights, participation, and quality of life for older adults. Through its annual award, it honors individuals, organizations, and initiatives that are dedicated to these causes. The jury consists of representatives from the Foundation of the German Institute for Human Rights, the research group “Human Rights and Ethics in Medicine for Older Adults” at Friedrich-Alexander University Erlangen-Nuremberg, and the Catholic University of Applied Sciences in Munich.
