Systematic reviews summarise and evaluate studies on a particular topic. They provide information, for example, regarding whether an intervention is beneficial. This type of review is particularly important for healthcare professionals because they can use the results of the review to guide their actions. There is a growing awareness that the public, including people living with dementia and their close contacts (both family and non-family), need to be actively involved in the process of preparing these reviews when they are concerned with the topic of said reviews. Despite this consensus, it is often the case that only healthcare professionals are involved, without the "experts by experience" themselves.
At present, there is a lack of a dementia-sensitive framework to actively involve people living with dementia and their close contacts, together with healthcare professionals, as co-researchers in systematic reviews. The Deutsches Zentrum für Neurodegenerative Erkrankungen (DZNE) decided it was important to develop such a framework in order to inform practice and, with this in mind, it launched a project called DECIDE-SR. The framework that is being developed by the project will later be made available to the public free of charge to increase awareness of this topic and to contribute towards more frequent, well-organised and meaningful involvement of people living with dementia and those close to them, in systematic reviews.
On 11 July 2023, the researchers published a paper in the BioMed Central (BMC) journal of Research Involvement and Engagement, entitled "Participatory development of a framework to actively involve people living with dementia and those from their social network, and healthcare professionals in conducting a systematic review: the DECIDE-SR protocol". Alzheimer Europe is collaborating with DECIDE-SR and our Director for Projects Dianne Gove and Project Officer Ana Diaz are both co-authors. Dianne and Ana work closely with the European Working Group of People with Dementia (EWGPWD) and we are delighted to see that the group's former (and founding) Chairperson Helga Rohra is involved in the DECIDE-SR project and is also a co-author of this new paper. Read the full paper, here:
https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-023-00461-2