Johns Hopkins University School of Medicine, Edward D. Miller Research Building, Baltimore, Maryland, USA.
Brookdale Department of Geriatrics and Palliative Medicine, Institute for Translational Epidemiology, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Pain Symptom Manage. 2019 Feb;57(2):199-208.e2. doi: 10.1016/j.jpainsymman.2018.11.004. Epub 2018 Nov 17.
Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life.
The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers.
Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors.
The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain.
Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.
在患者生命的最后阶段，家庭成员照顾者在照顾痴呆症患者方面发挥着至关重要且要求苛刻的作用。
本研究旨在确定痴呆症照顾者在老年人接近生命终点时是否会增加照顾负担，其次，这种关联是否因非痴呆症照顾者而异。
参与者包括一个接受自我护理或室内活动帮助的社区居住的老年人群体及其主要照顾者（3422 对）的全国代表性样本。从链接的医疗保险登记文件中评估老年人在调查后 12 个月内的死亡情况。多变量逻辑回归用于评估痴呆症和生命终点状态与照顾负担综合调整后（范围：0-9，使用 5 作为“高”负担的切点）的复合测量之间的关联其他老年和照顾者因素。
我们样本中痴呆症的患病率为 30.1％；在样本中，有 13.2％的人在 12 个月内死亡。经历高负担的照顾者比例从非痴呆症、非生命终点照顾者的低 13.5％到在 12 个月内死亡的老年痴呆症照顾者的高 35.0％不等。在痴呆症照顾者中，接近生命终点的老年痴呆症照顾者经历高照顾负担的可能性几乎是其两倍（OR=1.94，95％CI：1.10-3.45）。对于非痴呆症照顾者，在生命终点附近提供护理与高负担无关。
对于痴呆症照顾者来说，生命终点附近的负担增加尤其明显。需要采取干预措施来满足这一人群的需求。
