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

Innovation in Aging
Kara B DasselEli Iacob

Abstract

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. 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. 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 r...Continue Reading

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Citations

Apr 17, 2020·Healthcare·Riitta TurjamaaLiisa Koskinen
Nov 29, 2020·Epilepsy & Behavior : E&B·Benzi M KlugerMark Spitz
Jul 6, 2021·Palliative Medicine Reports·Kara B DasselMelody Mickens

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Software Mentioned

LEAD
TrialMatch
ResearchMatch
REDCap
SPSS

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