Engaging people living with dementia in the planning and implementation of dementia initiatives is essential. True partnership with people living with dementia collaboration and trust. Representing diverse experiences of dementia is ideal, with people of different backgrounds, challenges, and strengths.

The Authentic Partnership approach, developed by the Murray Alzheimer Research and Education Program (MAREP), outlines principles and enablers for engagement of people living with dementia in research and other initiatives. Authentic partnerships emphasize genuine inclusion, respect and and valuing of diverse perspectives regarding dementia, and especially of the experiences and perspectives of people living with dementia and their family care partners.

The DCI projects echoed many of these principles and enablers. The teams identified several crucial elements for engaging people living with dementia:

  • Building trust is vital and requires respect, patience, and empathy. Sharing our personal backgrounds that brought us to this important work enables trust.
  • Fostering collaboration with people living with dementia from the outset of the project is critical. This may involve creating advisory or steering committees that champion the inclusion of people living with dementia and recognizing the contributions of people living with dementia with honorariums and titles that highlight their pivotal role.
  • Dementia initiatives are avenues to amplify the voices of people living with dementia. Initiatives should encourage and prioritize the voices of lived experiences to reduce stigma and promote inclusion.
  • Providing opportunities for peer support where people with lived experience of dementia engage and share experiences can foster camaraderie, acceptance, and understanding.
  • Ensuring representation from diverse groups is a fundamental principle, as initiatives should include those they aim to serve, embracing diversity in ethno-cultural identity, gender identity, age, sexual orientation, and other identities.

Resources for meaningful engagement of people living with dementia

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