Division of Infection and Immunity, School of Medicine, Cardiff University.
Institute of Medicines Development.
Alzheimer Dis Assoc Disord. 2024;38(4):338-343. doi: 10.1097/WAD.0000000000000647. Epub 2024 Nov 7.
Dementia can adversely affect the quality of life (QoL) of family members/partners of those affected. Measuring this often-neglected burden is critical to planning and providing appropriate support services. This study measures this impact using the Family-Reported Outcome Measure (FROM-16).
A large UK cross-sectional online study through patient research platforms, recruited family members/partners of people with dementia, to complete the FROM-16.
Totally, 711 family members/partners (mean age=58.7 y, SD=12.5; females=81.3%) of patients (mean age=81.6, SD=9.6; females=66.9) with dementia completed the FROM-16. The FROM-16 mean total score was 17.5 (SD=6.8), meaning "a very large effect" on QoL of family members, with females being more adversely impacted.
Dementia profoundly impacts the QoL of family members/partners of patients. Routine use of FROM-16 could signpost provision of care support, reducing family members' burnout. Such routine data could be used in economic analysis of the burden of dementia as well as in predicting institutionalization.
痴呆症会对受影响者的家庭成员/伴侣的生活质量（QoL）产生不利影响。衡量这一经常被忽视的负担对于规划和提供适当的支持服务至关重要。本研究使用家庭报告结局测量工具（FROM-16）来衡量这一影响。
通过患者研究平台进行了一项大型英国横断面在线研究，招募了痴呆症患者的家庭成员/伴侣，让他们完成 FROM-16。
共有 711 名（平均年龄=58.7 岁，标准差=12.5；女性=81.3%）痴呆症患者（平均年龄=81.6 岁，标准差=9.6；女性=66.9%）的家庭成员/伴侣完成了 FROM-16。FROM-16 的平均总分是 17.5（标准差=6.8），这意味着对家庭成员的 QoL 产生了“非常大的影响”，女性受到的负面影响更大。
痴呆症严重影响了患者家庭成员/伴侣的生活质量。常规使用 FROM-16 可以为提供护理支持提供线索，减少家庭成员的倦怠。这种常规数据可用于痴呆症负担的经济分析以及预测机构化。
