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 ACP concordance. As part of our pilot study implementing the LEAD intervention with dementia care dyads, we conducted a multi-method 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 seven dyadic ACP conversations from a pilot study about dyadic dementia ACP.
Results: The scoping review demonstrated 1) no definition of care dyad ACP concordance was reported; 2) surrogate accuracy in end-of-life decisions varies widely; and 3) best practices for ACP in dementia may aid in achieving ACP concordance, but do not prioritize it as an outcome. Qualitative analysis identified seven 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.
Keywords: Qualitative research methods; caregiving – informal; decision making; end of life care; surrogate decision-making.
© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.