Department of Psychiatry, Alzheimer Center, EMGO Institute for Health and Care Research, VU University Medical Centre, 1075 BG Amsterdam, The Netherlands.
Aging Ment Health. 2010 May;14(4):461-70. doi: 10.1080/13607860903311741.
The need for information about the disease and coping with the consequences, as well as on available care and welfare services, is frequently unmet in people with dementia and their carers. To provide carers of community-dwelling people with dementia with tailored information, the DEMentia-specific dynamic interactive social chart (DEM-DISC) was developed. The impact on the daily life of people with dementia and their carers, the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated.
DEM-DISC was tested among informal carers in a pretest-posttest control group design. Fourteen informal carers could access DEM-DISC at home during a two month period. Fourteen controls did not have access to DEM-DISC. Data were collected by separate interviews with people with dementia and carers at pretest and posttest, by means of digital logging, short telephone interviews, and a bottleneck checklist during the intervention period.
People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls. Although they were not explicitly satisfied with this first prototype of DEM-DISC, carers found DEM-DISC easy to learn and relatively user friendly. Carers acknowledged the system's benefits.
The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC. It would be worthwhile to continue to develop DEM-DISC and to conduct randomized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure.
患有痴呆症的患者及其照护者经常无法获得有关疾病的信息以及应对疾病后果的方法,也无法获得可用的护理和福利服务。为了向社区居住的痴呆症照护者提供定制信息,开发了针对痴呆症的动态交互社会图表(DEM-DISC)。评估了 DEM-DISC 对痴呆症患者及其照护者日常生活的影响、用户友好性和实用性。
采用预试验-后试验对照设计,在非正式照护者中对 DEM-DISC 进行了测试。14 名非正式照护者可以在两个月的时间内在家中访问 DEM-DISC。14 名对照组无法访问 DEM-DISC。在干预期间,通过单独采访痴呆症患者和照护者、数字记录、简短电话访谈和瓶颈清单,在预测试和后测试时收集数据。
与使用 DEM-DISC 之前相比,痴呆症患者和非正式照护者报告的满足需求更多,未满足需求更少,实验组的照护者报告的能力水平高于对照组。尽管他们对 DEM-DISC 的这一初始原型并不满意,但照护者发现它易于学习且相对用户友好。照护者承认该系统具有益处。
积极影响可能是由 DEM-DISC 系统且定制的个性化信息提供方式引起的。继续开发 DEM-DISC 并对其对患者和照护者的影响以及对疗养院入院和医疗保健支出的影响进行随机试验是值得的。