Dementia Behavior Consulting LLC, Minneapolis, MN, USA.
Dementia (London). 2019 Jul;18(5):1629-1650. doi: 10.1177/1471301217719789. Epub 2017 Aug 25.
The official vision of the U.S. Alzheimer’s Association is “A world without Alzheimer’s disease.” The “dual mission” of the organization is “to eliminate Alzheimer’s disease through the advancement of research and to enhance care and support for individuals, their families and caregivers.” Using numerous reports from leading researchers and practitioners, a case is made by which the “dual mission” is grossly unbalanced with predominant focus on biomedical research aimed at curing the disease compared to research and practices focused on the psycho-social impacts of and adaptations to living with it. These experts discuss the likelihood of curing the disease, the complexity of realizing this goal, and the urgent need to “bring back the social and psychological aspects” of living with dementia to center stage. The moral responsibility to balancing the “dual mission” in accordance with the original motivation of the grassroots organizations who formed the association in 1980 is discussed.
美国阿尔茨海默病协会的官方愿景是“一个没有阿尔茨海默病的世界”。该组织的“双重使命”是“通过推进研究来消除阿尔茨海默病，并加强对个人、他们的家庭和照顾者的护理和支持”。该组织利用众多领先研究人员和从业者的报告，提出了一个观点，即“双重使命”严重失衡，主要侧重于旨在治愈疾病的生物医学研究，而不是专注于研究和实践应对疾病的心理社会影响和适应。这些专家讨论了治愈疾病的可能性、实现这一目标的复杂性，以及迫切需要将痴呆症患者的生活的社会和心理方面重新置于中心舞台。根据 1980 年成立该协会的基层组织的原始动机，讨论了平衡“双重使命”的道德责任。
