Jordana L Clayton, Katherine P Supiano, Nancy Aruscavage, Sara G Bybee, Rebecca L Utz, Eli Iacob, Kara B Dassel
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引用次数: 0
Abstract
Background and objectives: Individuals with dementia may require a surrogate decision maker as their disease progresses. To prepare for this potential role, dementia care partners need to develop a thorough understanding of their care recipient's end-of-life values and preferences, or care dyad advance care planning (ACP) concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multimethod investigation to define care dyad ACP concordance.
Research design and methods: We conducted a scoping review of peer-reviewed studies published after 1991 in English focusing on care dyad ACP concordance in dementia care and included 34 articles. Concurrently, we used descriptive qualitative analysis to analyze 7 dyadic ACP conversations from a pilot study about dyadic dementia ACP.
Results: The scoping review demonstrated (a) no definition of care dyad ACP concordance was reported; (b) surrogate accuracy in end-of-life decisions varies widely; and (c) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified 7 elements for achieving concordance: Respect/Regard; use of Clarifying Processes; Conveying Health Care Scenarios; Affirmation of Understanding; Recognizing Uncertainty; Expression of Positive Emotions; and Trust.
Discussion and implications: Care dyad ACP concordance occurs when care recipients and care partners both understand a care recipient's end-of-life values, understand the end-of-life preferences informed by those values, and the care partner expresses a willingness to accomplish the care recipient's wishes to the best of their ability. ACP concordance can be further operationalized for research and clinical care.
期刊介绍:
The Gerontologist, published since 1961, is a bimonthly journal of The Gerontological Society of America that provides a multidisciplinary perspective on human aging by publishing research and analysis on applied social issues. It informs the broad community of disciplines and professions involved in understanding the aging process and providing care to older people. Articles should include a conceptual framework and testable hypotheses. Implications for policy or practice should be highlighted. The Gerontologist publishes quantitative and qualitative research and encourages manuscript submissions of various types including: research articles, intervention research, review articles, measurement articles, forums, and brief reports. Book and media reviews, International Spotlights, and award-winning lectures are commissioned by the editors.