Research Involvement and Engagement (Sep 2023)

Dementia resources for eating, activity, and meaningful inclusion (DREAM) toolkit co-development: process, output, and lessons learned

  • Laura E. Middleton,
  • Shannon Freeman,
  • Chelsea Pelletier,
  • Kayla Regan,
  • Rachael Donnelly,
  • Kelly Skinner,
  • Cindy Wei,
  • Emma Rossnagel,
  • Huda Jamal Nasir,
  • Tracie Albisser,
  • Fatim Ajwani,
  • Sana Aziz,
  • William Heibein,
  • Ann Holmes,
  • Carole Johannesson,
  • Isabella Romano,
  • Louisa Sanchez,
  • Alexandra Butler,
  • Amanda Doggett,
  • M. Claire Buchan,
  • Heather Keller

DOI
https://doi.org/10.1186/s40900-023-00497-4
Journal volume & issue
Vol. 9, no. 1
pp. 1 – 16

Abstract

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Abstract Promoting wellbeing of persons with dementia and their families is a priority of research and practice. Engaging diverse partners, including persons with dementia and their families, to co-develop interventions promotes relevant and impactful solutions. We describe the process, output, and lessons learned from the dementia resources for eating, activity, and meaningful inclusion (DREAM) project, which co-developed tools/resources with persons with dementia, care partners, community service providers, health care professionals, and researchers with the aim of increasing supports for physical activity, healthy eating, and wellbeing of persons with dementia. Our process included: (1) Engaging and maintaining the DREAM Steering Team; (2) Setting and navigating ways of engagement; (3) Selecting the priority audience and content; (4) Drafting the toolkit; (5) Iterative co-development of tools and resources; (6) Usability testing; and (7) Implementation and evaluation. In virtual meetings, the DREAM Steering Team confirmed the toolkit audiences (primary: community service providers; secondary: persons with dementia and care partners) and identified and evolved content areas. An environmental scan identified few existing, high-quality resources aligned with content areas. The Steering Team, additional multi-perspective partners, and external contractors iteratively co-developed new tools/resources to meet gaps over a 4-month virtual process that included virtual meetings, email exchange of documents and feedback, and one-on-one calls by telephone or email. The final DREAM toolkit includes a website with seven learning modules (on the diversity of dementia, rights and inclusion of persons living with dementia, physical activity, healthy eating, dementia-inclusive practices), a learning manual, six videos, nine handouts, and four wallet cards ( www.dementiawellness.ca ). Our co-development participants rated the process highly in relation to the principles and enablers of authentic partnership even though all engagement was virtual. Through use of the co-developed DREAM toolkit, we anticipate community service providers will gain the knowledge and confidence needed to provide dementia-inclusive wellness programs and services that benefit persons with dementia and their families.

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