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

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Date

2019

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Publisher

Oxford University Press

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.

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Keywords

Dementia, Family caregivers, Longitudinal design, Qualitative analysis

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