Center for Health Enhancement Systems Studies, University of Wisconsin-Madison, Madison, WI, USA.
Department of Industrial and Systems Engineering, University of Wisconsin-Madison, Madison, WI, USA.
J Alzheimers Dis. 2019;70(2):541-552. doi: 10.3233/JAD-190052.
Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system.
This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts.
Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence.
Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features.
This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.
家庭成员承担了痴呆症患者的大部分护理工作。护理负担对照顾者的健康有重大影响,进一步加重了我们的医疗体系负担。到 2050 年,阿尔茨海默病的发病率将增加一倍以上,相应地增加了家庭照顾者的数量。需要采取干预措施来减轻他们的负担,以保护他们的健康和医疗体系的活力。
本文报告了一种旨在改善照顾者生活的计算机为基础的系统的开发和可行性测试。D-CHESS(痴呆症综合健康增强支持系统)允许用户获取信息、与其他照顾者交流、获得护理决策帮助,并与专家分享信息。
31 名照顾者被随机分配到干预组(接受 D-CHESS 治疗 6 个月)或对照组(接受护理书籍)。在 0、2、4 和 6 个月时进行调查,评估照顾者负担、家庭冲突、决策满意度、社会支持、孤独感、焦虑、抑郁和应对能力。
调查结果表明,D-CHESS 参与者在社会支持、焦虑、孤独感和应对能力方面的表现可能更好;两组在照顾者负担、决策满意度和抑郁方面相当,对照组报告的家庭冲突比干预组少。D-CHESS 使用数据表明,需要改进系统设计和内容,以提高对各种功能的认识和使用。
这项研究表明,D-CHESS 有可能对家庭照顾者产生积极影响,该系统值得进一步开发和研究,以进行全面的临床试验。