Applying person-centered research ethics in the design of dementia-specific measures

Sheila L. Molony, Sam Fazio, Ricci Sanchez, Joe Montminy, Maureen Rulison, Rev Dennis McGuire, Richard Feinn, Sangchoon Jeon, Rachel Montesano, Lorna Prophater, Kimberly VanHaitsma, Sheryl Zimmerman

Research output: Contribution to journalArticlepeer-review


There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.

Original languageEnglish (US)
Article number101139
JournalJournal of Aging Studies
StatePublished - Jun 2023

All Science Journal Classification (ASJC) codes

  • Health(social science)
  • General Arts and Humanities
  • General Social Sciences
  • Life-span and Life-course Studies


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