van den Kieboom Robin Cp, Bongers Inge Mb, Mark Ruth E, Snaphaan Liselore Jae
Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, Netherlands.
Research Unit Evidence Based Management of Innovation, Mental Health Care Institute Eindhoven, Eindhoven, Netherlands.
JMIR Res Protoc. 2019 Jan 28;8(1):e10952. doi: 10.2196/10952.
Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to support these people and their informal caregivers. Carefully designed interventions can answer the unmet needs of both people with dementia and their informal caregivers in the community. However, existing products, systems, and services are often too complex or unsuitable.
This study aims to identify, longitudinally, the changing needs (as dementia progresses) of people with dementia living at home and their informal caregivers. By developing co-creation-based innovations, these changing needs will hopefully be met.
A user-driven Living Lab design is used to structurally explore the needs over time of people with dementia (and their informal caregivers) living in the community in the North Brabant region of the Netherlands. In addition, co-creation-based innovations will be developed, tested, and evaluated by these people and their caregivers at home. All participants will complete complaints-oriented questionnaires at 3 time-points-at the baseline, 1 year, and 2 years after they start participating. Home interviews are scheduled to explore if and how these complaints translate into participants' specific needs or wishes. Focus groups meet on a monthly basis to further identify the needs of people with dementia and their informal caregivers and provide feedback to the stakeholders. In the context field, participants have an opportunity to actually test the products at home and provide feedback. Quantitative outcome measurements include neuropsychiatric symptoms, cognitive decline, independence in activities of daily living, safety, and caregiver burden. Qualitative outcome measurements include feedback to the stakeholders regarding the needs of people with dementia and their informal caregivers and how these needs change over time, as well as user experiences about the specific innovations.
Participant recruitment will start in September 2018 and is ongoing. The first results of data analyses are expected in the spring of 2019.
The overall aim of Innovate Dementia 2.0 is to facilitate person-centered innovations developed for people with dementia and their informal caregivers at all stages as dementia progresses. This should lead to newly designed concepts and innovations, which are better able to answer the needs of people with dementia and their caregivers in the community.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10952.
由于目前尚无治愈痴呆症的方法，迫切需要寻找其他方式来支持这些患者及其非正式照护者。精心设计的干预措施可以满足痴呆症患者及其社区非正式照护者尚未得到满足的需求。然而，现有的产品、系统和服务往往过于复杂或不合适。
本研究旨在纵向确定居家痴呆症患者及其非正式照护者不断变化的需求（随着痴呆症的进展）。通过开发基于共同创造的创新，有望满足这些不断变化的需求。
采用用户驱动的生活实验室设计，以结构性地探索荷兰北布拉班特地区社区中痴呆症患者（及其非正式照护者）随时间变化的需求。此外，这些患者及其照护者将在家中对基于共同创造的创新进行开发、测试和评估。所有参与者将在开始参与后的3个时间点（基线、1年和2年）完成以抱怨为导向的问卷。安排进行家庭访谈，以探究这些抱怨是否以及如何转化为参与者的具体需求或愿望。焦点小组每月举行会议，以进一步确定痴呆症患者及其非正式照护者的需求，并向利益相关者提供反馈。在实际使用场景中，参与者有机会在家中实际测试产品并提供反馈。定量结果测量包括神经精神症状、认知衰退、日常生活活动的独立性、安全性和照护者负担。定性结果测量包括向利益相关者反馈痴呆症患者及其非正式照护者的需求以及这些需求如何随时间变化，以及关于具体创新的用户体验。
参与者招募于2018年9月开始，目前仍在进行中。预计2019年春季得出数据分析的初步结果。
“痴呆症创新2.0”的总体目标是促进在痴呆症进展的各个阶段为痴呆症患者及其非正式照护者开发以患者为中心的创新。这应会带来新设计的概念和创新，从而更好地满足社区中痴呆症患者及其照护者的需求。
国际注册报告识别码（IRRID）：DERR1-10.2196/10952
