New research helps prevent overburdening of children caring for parents with dementia
Inholland University of Applied Sciences, Stichting Regie op Dementie, and Unbeaten Studio have launched a new research project: We kijken het nog even aan = Zorg² (Care Squared). This project, funded by ZonMw, focuses on the often-overlooked group of children who provide informal care for parents with dementia. Empathetic Co-Design is used to investigate which mechanisms and triggers can help them to take action sooner and thus prevent them from becoming overburdened.
Timely support
Informal care for people with dementia is often associated with partners, but children also play a crucial role. They usually combine their caregiving responsibilities with work and family life, making them highly vulnerable to stress and burnout. Despite the availability of practical support, many caregivers struggle to find the right help in time. Combined with the often narrow focus of professional caregivers on dementia itself, this leads to a decreased quality of life for the parent(s).
"Many children of parents with dementia wait too long before seeking help. They ‘wait and see’ until the burden becomes too much," says Hilma van Slooten, founder of Regie op Dementie and project leader of this research. "With this study, we aim to help them find support earlier."
Approach: Empathic Co-Design
The research is led by Professor Wina Smeenk and her team from the Societal Impact Design research group, which is part of the ARC Research Center. The researchers use the Empathic Co-Design method, actively involving caregivers in the design process. Wina Smeenk explains: "By using a design-based approach with the people directly involved, we ensure that the outcomes align with their context. This way, we know they will have a positive impact in practice."
Impact on caregiving and education
This research not only impacts caregivers but also education at Inholland. Students from the Social Work program are involved in the study, gaining in-depth insight into the challenges of informal care. The knowledge they acquire can be directly applied in practice.
More information about the research and how caregivers can participate can be found at www.regieopdementie.nl/codesignonderzoek, where interim findings are also shared.
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