On Writing Scientific Manuscripts With a Stakeholder Group of Persons Living With Dementia

Published in: The American Journal of Geriatric Psychiatry, Volume 28, Issue 4, pages 445–447 (April 2020). doi: 10.1016/j.jagp.2019.11.007

by Lori Frank, Emily Shubeck, Katie Maslow, Gary Epstein-Lubow

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As people without the lived experience of dementia, we have the following observations about the risk and the challenges. First, the reality of disease progression made speed of writing activities of utmost importance. Over the time that has passed from the work of the Persons Living with Dementia (PLWD) stakeholder group in early 2017 to publication of these manuscripts, group members themselves and the group facilitators and coauthors observed a change in many members' cognitive functioning. These changes added to the challenges of manuscript preparation. Several group meetings were held to discuss conflict of interest and authorship, and to support completion of related forms required by journals. Group facilitators and the corresponding author constructed explanatory notes in advance, and devised away to collect required information and minimize cognitive burden for form completion.

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