McLean Hospital (JMW, BPF), Belmont, MA; Harvard Medical School (JMW, JJL, JMG, LY, BTH, DB, BPF, OIO), Boston, MA.
Harvard Medical School (JMW, JJL, JMG, LY, BTH, DB, BPF, OIO), Boston, MA; Massachusetts Alzheimer's Disease Research Center (JJL, JMG, LY, BTH, DB, OIO), Department of Neurology, Massachusetts General Hospital, Boston, MA.
Am J Geriatr Psychiatry. 2020 Oct;28(10):1070-1078. doi: 10.1016/j.jagp.2020.01.189. Epub 2020 Feb 6.
As cognitive impairment progresses, people with dementia increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about concordance on everyday preferences between persons with cognitive impairment and their care partners.
The sample included 69 dyads of persons with cognitive impairment (Clinical Dementia Rating Scale ≥0.5) and their care partners. We used the Preferences for Everyday Living Inventory (PELI) to assess preferences for activities and lifestyle choices among persons with cognitive impairment. The PELI was concurrently but separately administered to care partners, who answered as surrogate decision-makers. Factor analysis was used to ascertain factor structure of the PELI; reliability measures were computed within the sample. Paired sample t-tests were used to estimate differences in scores of corresponding PELI items for each factor. Multiple regression models were used to relate predictors, including neuropsychiatric symptoms, to agreement levels.
Four factors were identified from the PELI: autonomous choice, social engagement, personal growth, and keeping a routine. Significant participant-care partner discrepancy was found in "social engagement" preferences (e.g., regular contact with family, meeting new people, volunteering). Geriatric Depression Scale-15 score and care partner sex were significantly associated with participant-care partner discrepancies in "social engagement" preferences.
This study yields new insights regarding the most important preferences for persons with cognitive impairment and clarifies a path to optimizing surrogate decision-making around everyday preferences by highlighting areas of apparent disagreement and identifying potential predictors of discrepancy.
随着认知障碍的进展,痴呆症患者越来越依赖代理人来进行日常活动。然而,对于认知障碍患者及其护理伙伴之间在日常偏好上的一致性知之甚少。
该样本包括 69 对认知障碍患者(临床痴呆评定量表≥0.5)及其护理伙伴。我们使用日常生活偏好量表(PELI)评估认知障碍患者的活动和生活方式选择偏好。PELI 同时但分别由作为代理人的护理伙伴回答。使用因子分析确定 PELI 的因子结构;在样本中计算可靠性测量值。使用配对样本 t 检验估计每个因子对应的 PELI 项目得分的差异。使用多元回归模型将预测因素(包括神经精神症状)与一致性水平相关联。
PELI 确定了四个因素:自主选择、社会参与、个人成长和保持常规。在“社会参与”偏好方面(例如,定期与家人联系、结识新朋友、志愿服务),发现了参与者与护理伙伴之间的显著差异。老年抑郁量表-15 评分和护理伙伴性别与“社会参与”偏好方面的参与者与护理伙伴差异显著相关。
这项研究提供了关于认知障碍患者最重要偏好的新见解,并通过突出明显的分歧领域和确定分歧的潜在预测因素,为优化围绕日常偏好的代理决策指明了方向。