Samuel DuBois Cook Center on Social Equity, Duke University, Durham, North Carolina, USA.
Social and Behavioral Sciences, Yale School of Public Health, New Haven, Connecticut, USA.
Gerontologist. 2024 Apr 1;64(4). doi: 10.1093/geront/gnad047.
As cases of Alzheimer's disease and related dementias (ADRD) increase worldwide, research design has placed additional emphasis on social and behavioral factors that affect ADRD symptomatology and quality of life. Despite this, few studies have incorporated people living with ADRD as research partners. We propose 5 community-engaged recommendations for incorporating people living with ADRD into future research as full collaborators. The proposed recommendations center the experiences of people living with ADRD as crucial contributions to scientific inquiry. The guidelines are based on experiences at a 2-day "Empowering Partnerships" workshop in 2019; post workshop activity continued through 2021 with ongoing collaborations, analysis, and reflective practice. The workshop and subsequent conversations engaged a network of people living with ADRD, informal carepartners, and researchers to collectively build their capacities to partner in all aspects of person-centered research. To empower people living with ADRD as research partners, we recommend that research teams (a) create a flexible schedule of communication and/or meetings to accommodate a wide range of ADRD symptoms, (b) generate team-specific communication strategies/guidelines, (c) incorporate lived experiences of people living with ADRD into research protocols, (d) involve people living with ADRD in all aspects of a project, beginning in the developmental stages, and (e) incorporate skilled facilitators to facilitate communication between stakeholder groups. This multi-vocal approach to research will diversify ADRD research and ensure that projects align with the priorities and capacities of principal stakeholders by incorporating individuals with a wide range of cognitive capabilities that more fully represent the diversity of ADRD experiences.
随着全球阿尔茨海默病和相关痴呆症（ADRD）病例的增加，研究设计更加注重影响 ADRD 症状和生活质量的社会和行为因素。尽管如此，很少有研究将患有 ADRD 的人纳入研究伙伴。我们提出了 5 条社区参与的建议，将患有 ADRD 的人纳入未来的研究，作为全面的合作者。拟议的建议将患有 ADRD 的人的经验作为对科学探究的重要贡献。这些准则基于 2019 年为期两天的“增强伙伴关系”研讨会的经验；研讨会结束后，通过 2021 年的持续合作、分析和反思实践继续开展活动。研讨会和随后的对话吸引了患有 ADRD 的人、非正式护理伙伴和研究人员网络，共同建立他们在以人为中心的研究的各个方面作为合作伙伴的能力。为了使患有 ADRD 的人成为有能力的研究伙伴，我们建议研究团队：(a) 制定灵活的沟通/会议时间表，以适应各种 ADRD 症状；(b) 制定团队特定的沟通策略/准则；(c) 将患有 ADRD 的人的生活经历纳入研究方案；(d) 让患有 ADRD 的人从项目的发展阶段开始参与项目的各个方面；(e) 聘请有经验的协调人，促进利益相关者群体之间的沟通。这种多声音的研究方法将使 ADRD 研究多样化，并通过纳入具有广泛认知能力的个人，更全面地代表 ADRD 经验的多样性，确保项目与主要利益相关者的优先事项和能力保持一致。
