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Topic:

  • Co-production
  • Involvement good practice
  • Working with communities

Resource type:

  • Article

Authors:

  • Sarah Walter, Ríona McArdle, Emily A. Largent, Rebecca Edelmayer, Claire Sexton, Sandra Loyola Sandoval, Helen Medsger, Nancy Meserve, Roland Samaroo, Cynthia Sierra, Marlon M. P. Smeitink, Allison Gibson, Sarah Gregory, Diana Karamacoska, Iracema Leroi, Doris Molina-Henry, Aida Suarez-Gonzalez, Crystal M. Glover

Publication date:

  • 14th November 2024

Date added to Learning for Involvement:

  • 29th November 2024
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Description:

The field of Alzheimer's disease and related dementias (ADRD) urgently requires inclusive research to ensure the priorities and outcomes of research apply to those most impacted. We postulate public and participant involvement (PPI) as a pathway to achieving the best science, both in research that informs health and social policy as well as in therapeutic studies to treat and prevent ADRD. This position paper aims to provide dementia researchers with evidence to understand how to apply PPI. We begin by highlighting the disparities experienced by people with dementia, including ageism, stigma of cognitive impairment, and health disparities for minoritized communities. We then provide examples of PPI in ADRD across the research lifecycle, from defining research topics of priority to those impacted by ADRD, through the design, analysis, dissemination, and translation to policy and practice. We also provide recommendations to create and maintain collaboration between researchers and communities through PPI.

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