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Community-Engaged Recommendations for Empowering People Living With Dementia to be Research Collaborators
Eric E Griffith1, Joan K Monin2, Michael Lepore3
1Samuel DuBois Cook Center on Social Equity, Duke University, Durham, North Carolina, USA.
The Gerontologist
|April 16, 2023
Summary
People living with Alzheimer's disease and related dementias (ADRD) should be full partners in research. Recommendations focus on flexible communication, lived experience integration, and early involvement to enhance ADRD studies.
Area of Science:
- Gerontology
- Neuroscience
- Public Health
Background:
- Alzheimer's disease and related dementias (ADRD) cases are rising globally.
- Research increasingly focuses on social/behavioral factors impacting ADRD.
- Few studies involve individuals with ADRD as active research partners.
Purpose of the Study:
- To propose community-engaged recommendations for including people with ADRD as research collaborators.
- To center the lived experiences of individuals with ADRD in scientific inquiry.
- To enhance person-centered research through genuine partnerships.
Main Methods:
- Based on a 2019 "Empowering Partnerships" workshop and ongoing collaborations (2019-2021).
- Engaged people with ADRD, informal care partners, and researchers.
- Developed 5 collaborative recommendations for research practice.
Main Results:
- Flexible communication schedules accommodating ADRD symptoms.
- Team-specific communication strategies and guidelines.
- Integration of lived ADRD experiences into research protocols.
- Involvement of people with ADRD from project inception.
- Use of skilled facilitators for stakeholder communication.
Conclusions:
- Empowering people with ADRD as research partners diversifies ADRD research.
- This approach ensures research aligns with stakeholder priorities and capacities.
- Incorporating diverse ADRD experiences leads to more representative studies.
Keywords:
Alzheimer’s disease and related dementiasCommunity-based participatory researchRecruitment and retentionSocial stigmaMore Related Videos
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