Dispositional Theories of Knowledge

Gundersen, Lars

doi:10.4324/9781315257617

Cited by 1 publication

(1 citation statement)

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“…During later stages of cognitive impairment, they were more uncertain of their preferred location of care and less likely to prefer in-home care with a greater preference for nursing home or residential hospice than they were during the early stages of dementia. Although using hypothetical future scenarios to capture potential change is not as accurate as measuring a construct with repeated measures (Gundersen, 2003), in the case of ADRD where cognitive decline is progressive and not curable, it is not feasible to measure preferences in a repeated measures framework when cognitive impairment is severe. Thus, having a person with early-stage ADRD think about and anticipate their preferences and potential changes in those preferences is an important and essential component to advance care planning within a dementia-focused context.…”

Section: Discussionmentioning

confidence: 99%

Development of a Dementia-Focused End-of-Life Planning Tool: The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia)

Dassel

Utz

Supiano

et al. 2019

Innovation in Aging

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Background and Objectives To address the unique characteristics of Alzheimer’s disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment. Research Design and Methods A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice. Results Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (α = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable. Discussion and Implications The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.

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Section: Discussionmentioning

confidence: 99%