Daube Dominik, Reifegerste Doreen
Friedrich-Schiller-Universität Jena, Jena, Deutschland.
Professur für Gesundheitskommunikation, Institute for Planetary Health Behaviour (IPB), Universität Erfurt, Nordhäuser Str. 63, 99089, Erfurt, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2024 Aug;67(8):947-955. doi: 10.1007/s00103-024-03893-7. Epub 2024 May 28.
A diagnosis of dementia places a heavy burden on those affected and their families. Often, difficult decisions must be made. Ideally, people with a new dementia diagnosis make informed decisions together with family members. Digital informational materials can be an important low-threshold resource for making informed decisions. They should provide comprehensive information about dementia, including both primary prevention (risk factors for the onset of dementia) and later treatment options. They should also cover precautionary measures that can make future decisions easier (e.g., advance directives, power of attorney). However, there is currently no comprehensive overview of the various online resources for dementia-related information.
This study explores digital informational materials on dementia for different target groups in the German-speaking area using an innovative systematic search strategy. It examines how these materials are structured in terms of risk factors, treatment options, and decision support. This methodological approach is new, so it is described and discussed in detail.
The results show that most materials are intended for people with dementia and their families. Treatment measures are often discussed without explaining the risk factors they are meant to address. There is little focus on preventive measures that could support decision-making.
The unbalanced presentation could lead to certain measures being difficult to understand (for laypeople) or to misinterpretation of risk factors. Important implications are drawn from these findings.
痴呆症的诊断给患者及其家人带来沉重负担。通常,必须做出艰难的决定。理想情况下,新诊断出痴呆症的患者应与家庭成员共同做出明智的决定。数字信息材料可以成为做出明智决定的重要低门槛资源。它们应提供有关痴呆症的全面信息,包括一级预防(痴呆症发病的风险因素)和后续治疗选择。它们还应涵盖有助于简化未来决策的预防措施(例如,预先指示、委托书)。然而,目前尚无关于痴呆症相关信息的各种在线资源的全面概述。
本研究采用创新的系统搜索策略,探索德语区针对不同目标群体的痴呆症数字信息材料。研究这些材料在风险因素、治疗选择和决策支持方面的结构方式。这种方法是新的,因此将详细描述和讨论。
结果表明,大多数材料是针对痴呆症患者及其家人的。讨论治疗措施时,往往不解释其旨在解决的风险因素。很少关注有助于决策的预防措施。
这种不平衡的呈现方式可能导致某些措施(对于外行来说)难以理解或对风险因素产生误解。从这些发现中得出了重要启示。