Dementia and Its Profound Impact on Family Members and Partners: A Large UK Cross-Sectional Study.

IF 1.8 4区医学 Q3 CLINICAL NEUROLOGY Alzheimer Disease & Associated Disorders Pub Date : 2024-11-07 DOI:10.1097/WAD.0000000000000647

R Shah, M S Salek, F M Ali, S J Nixon, K Otwombe, J R Ingram, A Y Finlay

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Abstract

Introduction: 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).

Methods: A large UK cross-sectional online study through patient research platforms, recruited family members/partners of people with dementia, to complete the FROM-16.

Results: 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.

Conclusions: 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.

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痴呆症及其对家庭成员和伴侣的深远影响：英国一项大型横断面研究

引言痴呆症会对患者家庭成员/伴侣的生活质量（QoL）产生不利影响。衡量这种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。本研究采用 "家庭报告结果测量法"（FROM-16）来衡量这种影响：方法：英国通过患者研究平台开展了一项大型横断面在线研究，招募痴呆症患者的家庭成员/伴侣填写 FROM-16：共有 711 名痴呆症患者（平均年龄为 58.7 岁，SD=12.5；女性=81.3%）的家庭成员/伴侣（平均年龄为 81.6 岁，SD=9.6；女性=66.9）完成了 FROM-16。FROM-16 的平均总分为 17.5（SD=6.8），这意味着对家庭成员的 QoL 有 "非常大的影响"，女性受到的负面影响更大：痴呆症对患者家庭成员/伴侣的 QoL 影响深远。常规使用 FROM-16 可以提供护理支持，减少家庭成员的倦怠感。这些常规数据可用于痴呆症负担的经济分析，以及预测入院治疗的情况。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Alzheimer Disease & Associated Disorders 医学-病理学

CiteScore

3.10

自引率

4.80%

发文量

期刊介绍： Alzheimer Disease & Associated Disorders is a peer-reviewed, multidisciplinary journal directed to an audience of clinicians and researchers, with primary emphasis on Alzheimer disease and associated disorders. The journal publishes original articles emphasizing research in humans including epidemiologic studies, clinical trials and experimental studies, studies of diagnosis and biomarkers, as well as research on the health of persons with dementia and their caregivers. The scientific portion of the journal is augmented by reviews of the current literature, concepts, conjectures, and hypotheses in dementia, brief reports, and letters to the editor.