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漫长而曲折的道路:带着坚毅与优雅照顾痴呆患者

A Long and Winding Road: Dementia Caregiving With Grit and Grace.

作者信息

Roberto Karen A, Mccann Brandy Renee, Blieszner Rosemary, Savla Jyoti

机构信息

Institute for Society, Culture and Environment, Virginia Tech, Blacksburg, VA.

Center for Gerontology, Virginia Tech, Blacksburg, VA.

出版信息

Innov Aging. 2019 Aug 23;3(3):igz021. doi: 10.1093/geroni/igz021. eCollection 2019 Jul.

Abstract

BACKGROUND AND OBJECTIVES

Many dementia caregivers provide care for numerous years. Exhibiting grit, or commitment and persistence in the face of adversity, may bolster their ability to manage caregiving challenges. We explored grit in relationship to memory and behavior problems and response to stressors among women engaged in long-term dementia care.

RESEARCH DESIGN AND METHODS

Informed by a life course perspective, and guided by stress-process theory, we interviewed 10 women with a spouse or parent initially diagnosed with mild cognitive impairment 4 times over 10 years. Using Charmaz's analysis methods and grit as a sensitizing concept, we employed an unfolding analytic strategy involving (a) thematic analysis to identify expressions of grit in response to caregiving stressors across interviews and (b) case-by-case comparisons to assess associations of grit with the use of care strategies across caregivers over time.

RESULTS

Dementia caregivers experienced unrelenting and changing psychosocial and physical challenges. Over time, most women exhibited a sustained commitment to the relationship through the ways in which they protected the identity of the person with dementia, modified their expectations for emotional intimacy, and managed their financial affairs. They persevered as their roles and relationships fluctuated, often finding purpose and relief through employment and leisure pursuits. As care intensified, women who took charge and consciously made decisions in the best interest of the care recipient and themselves minimized stress.

DISCUSSION AND IMPLICATIONS

While some caregivers exhibited grit from the outset, all showed enhanced perseverance and commitment to the ways they managed memory-related changes over time. Developing confidence in their ability to manage and provide care helped the caregivers respond to stressors with purpose and sustain their roles and responsibilities. Enhancing grit in long-term dementia caregivers may result in better individual and relational outcomes.

摘要

背景与目标

许多痴呆症患者的照料者会提供多年的护理。展现出坚毅,即在面对逆境时的投入与坚持,可能会增强他们应对照料挑战的能力。我们探讨了坚毅与记忆和行为问题以及长期从事痴呆症护理的女性对应激源的反应之间的关系。

研究设计与方法

以生命历程视角为依据,并在压力过程理论的指导下,我们对10名配偶或父母最初被诊断为轻度认知障碍的女性进行了为期10年的4次访谈。运用查马兹的分析方法,并将坚毅作为一个敏感概念,我们采用了一种逐步展开的分析策略,包括:(a) 主题分析,以识别在访谈中应对照料应激源时坚毅的表现;(b) 逐案比较,以评估随着时间推移,坚毅与照料者使用照料策略之间的关联。

结果

痴呆症照料者经历了持续不断且变化的心理社会和身体挑战。随着时间的推移,大多数女性通过保护痴呆症患者的身份、调整对情感亲密的期望以及管理财务事务等方式,对这种关系表现出持续的投入。尽管她们的角色和关系不断波动,她们仍坚持不懈,常常通过工作和休闲活动找到意义和慰藉。随着照料需求的增加,那些主动负责并自觉做出符合照料对象和自身最佳利益决策的女性,压力最小。

讨论与启示

虽然有些照料者从一开始就表现出坚毅,但随着时间的推移,所有人在应对与记忆相关的变化时都表现出更强的毅力和投入。对自己管理和提供护理能力的信心增强,有助于照料者有目的地应对应激源,并维持她们的角色和责任。增强长期痴呆症照料者的坚毅可能会带来更好的个人和人际关系结果。

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