Glover Crystal M
Department of Neurology, School of Medicine, University of California Irvine, Orange, California, USA.
Alzheimer's Disease Research Center, Institute for Memory Impairments and Neurological Disorders, University of California, Irvine, California, USA.
Alzheimers Dement. 2025 Sep;21(9):e70661. doi: 10.1002/alz.70661.
Informal dementia caregivers play essential roles in their families, communities, and our society. Furthermore, their research participation is paramount to fully understanding dementia experiences and aging trajectories. In this Perspective, I reflect upon Session 8 of the National Institute on Aging (NIA) National Research Summit on Care, Services, and Supports for Persons Living with Dementia and Their Care Partners/Caregivers. I assert that the field prioritizes outreach, recruitment, and retention regarding the inclusion of informal dementia caregivers from diverse backgrounds in research. Fully characterizing heterogeneous caregiver experiences and examining the impacts of dementia caregiving requires centering informal caregivers in the complete context of study design, beginning with research questions. I offer three critical areas of research questions for consideration within aging and dementia research. These questions may serve as a foundation for future Summits and, ultimately, as a pathway to facilitate optimal health and aging for all informal dementia caregivers. HIGHLIGHTS: Research engagement and recruitment are critical components of dementia studies. These components must align with study design, especially research questions. Three critical areas of research questions will advance the field of dementia. Examining these research questions will provide evidence for policy and strategy. Questions focus on post-death caregiving, aging trajectories, and clinical trials.
非专业痴呆症照护者在其家庭、社区及我们的社会中发挥着至关重要的作用。此外,他们参与研究对于全面了解痴呆症经历和衰老轨迹至关重要。在这篇视角文章中,我反思了美国国立衰老研究所(NIA)关于痴呆症患者及其照护伙伴/照护者的护理、服务与支持的全国研究峰会的第8场会议。我认为该领域在将来自不同背景的非专业痴呆症照护者纳入研究方面,优先考虑了推广、招募和留用。要全面描述不同照护者的经历并研究痴呆症照护的影响,需要在从研究问题开始的完整研究设计背景中,将非专业照护者作为核心。我提出了衰老与痴呆症研究中需要考虑的三个关键研究问题领域。这些问题可为未来的峰会奠定基础,并最终成为促进所有非专业痴呆症照护者实现最佳健康和衰老的途径。要点:研究参与和招募是痴呆症研究的关键组成部分。这些组成部分必须与研究设计,尤其是研究问题保持一致。三个关键研究问题领域将推动痴呆症研究领域的发展。研究这些问题将为政策和策略提供依据。问题聚焦于死亡后的照护、衰老轨迹和临床试验。