ArticleInnovation in aging2019
Development of a Dementia-Focused End-of-Life Planning Tool: The LEAD Guide (
Article in Innovation in aging, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05909189 (LEADing Dementia End-of-Life Planning Conversations), which is not on this map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
LEADing Dementia End-of-Life Planning Conversations
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 23 citations in OpenAlex.
- Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.Health expectations : an international journal of public participation in health care and health policy · 2021Pooled it
- Patient- and Caregiver-Identified Goals for Advance Care Planning in Patients With Dementia or Cognitive Impairment.Dementia (London, England) · 2026Article
- Engaging in the Life-planning in Early Alzheimer's and other Dementias advance care planning intervention is associated with perceived advance care planning concordance and interpersonal connectedness.The Gerontologist · 2025Article
- Exploring the Feasibility of the LEAD Trial: Online Dyadic Dementia Care Planning for Early Alzheimer's and Other Dementias.The American journal of hospice & palliative care · 2025Article
- Using community engagement withContemporary clinical trials communications · 2024Article
- Advance Care Planning in the Context of Dementia: Defining Concordance.The Gerontologist · 2024Review
- Development of an Advance Care Planning Portal-Based Tool for Community-Dwelling Persons Living With Cognitive Impairment: The ACPVoice Tool.The American journal of hospice & palliative care · 2023Article
- Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Clinical Trial.OBM integrative and complimentary medicine · 2023Article
- Health Disparities in Advance Care Planning: Development of a Spanish-Language LEAD Guide (Life-Planning in Early Alzheimer's and Other Dementias).Health equity · 2023Article
- "I worry about this patient EVERY day": Geriatrics Clinicians' Challenges in Caring for Unrepresented Older Adults.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2022Article
- Advance Care Planning in Neurodegenerative Disorders: A Scoping Review.International journal of environmental research and public health · 2022Article
- A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.Palliative medicine reports · 2021Article
- Would people living with epilepsy benefit from palliative care?Epilepsy & behavior : E&B · 2021Review
- Experiences of Older Spousal Caregivers for Caring a Person with a Memory Disorder.Healthcare (Basel, Switzerland) · 2020Article
- Variations in the Path From Bench to Bedside in Translational Research on Caregiving.Innovation in aging · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
Abstract
BACKGROUND AND
objectivesTo 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
methodsA 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 (
resultsQualitative 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 ( 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.