Article of the month: June 2021

The website committee selected for publication of the month June:

Diaz A, Gove D, Nelson M, Smith M, Tochel C, Bintener C, Ly A, Bexelius C, Gustavsson A, Georges J, Gallacher J, Sudlow C. Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project. Health Expect. 2021 Jun;24(3):757-765. doi: 10.1111/hex.13246.

One of the goals of the ROADMAP (acronym for ‘real world outcomes across the Alzheimer’s Disease spectrum for better care: multi-modal data access platform’) project was to identify outcomes perceived important for people with dementia and their caregivers. The European Working Group of People with Dementia (EWGPWD) were invited to participate on the ROADMAP project and e.g. provide feedback on project materials and insight into terminology. In-person consultations with people with dementia and caregivers were organized. The EWGPWD promoted a better understanding of concepts around disease progression and how researchers might approach measuring and interpreting findings, among other important results. The role of the working group (in ROADMAP) showed to be highly influential.