Friedrich-Alexander-Universität Erlangen-Nürnberg, Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Erlangen, Germany.
University Hospital Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Center for Health Services Research in Medicine, Department of Psychiatryand Psychotherapy, Erlangen, Germany.
J Alzheimers Dis. 2022;89(3):1051-1061. doi: 10.3233/JAD-220363.
Dementia is one of the main triggers for care dependency among older adults who are predominantly cared for at home by relatives. To provide support in the care situation, health systems need valid information about the central needs of the affected people.
The present study aimed to develop a research instrument to assess the most important needs of people with dementia and their family caregivers.
The development of the 'Dementia Assessment of Service Needs (DEMAND)' took place within the project 'Digital Dementia Registry Bavaria (digiDEM Bayern)'. A focus group and an online survey with dementia experts were conducted to identify the most relevant support services and to develop the design of the instrument. The questionnaire was deployed in the digiDEM baseline data collection. Participants were asked to evaluate the comprehensibility of the questionnaire. Readability was assessed using the Flesch reading ease score.
Seventeen experts participated in the focus group and 59 people in the online survey. The final questionnaire included 13 support services. One hundred eighty-three participants (50 people with dementia and 133 family caregivers) completed the questionnaire at baseline. The mean comprehensibility score was 3.6 (SD = 2.3). The Flesch reading ease score result was 76.
A research instrument could be developed, enabling people with dementia and family caregivers to directly express their individual needs for specific support services. Results show that the DEMAND is easy to understand and short in execution. Therefore, supply gaps can be identified and transformed into a specific health care plan.
痴呆症是导致主要由亲属在家中照顾的老年人依赖护理的主要原因之一。为了在护理环境中提供支持,卫生系统需要有关受影响人群核心需求的有效信息。
本研究旨在开发一种研究工具,以评估痴呆症患者及其家庭照顾者的最重要需求。
“服务需求评估工具(DEMAND)”的开发是在“巴伐利亚数字化痴呆症登记处(digiDEM Bayern)”项目内进行的。通过焦点小组和在线调查,与痴呆症专家合作,确定了最相关的支持服务,并制定了工具设计。该问卷在 digiDEM 的基线数据收集过程中进行了部署。参与者被要求评估问卷的理解程度。可读性使用 Flesch 阅读舒适度得分进行评估。
17 名专家参加了焦点小组,59 人参加了在线调查。最终问卷包括 13 项支持服务。183 名参与者(50 名痴呆症患者和 133 名家庭照顾者)在基线时完成了问卷。平均理解程度评分为 3.6(SD=2.3)。Flesch 阅读舒适度得分结果为 76。
开发了一种研究工具,使痴呆症患者及其家庭照顾者能够直接表达他们对特定支持服务的个人需求。结果表明,DEMAND 易于理解,执行简短。因此,可以确定供应差距,并将其转化为特定的医疗保健计划。