Evidence map›Paper›PMID 40645625›Full record

ArticleBMJ open2025

Lucid episodes among people with Alzheimer's disease and related dementias and their impact on family caregiver stress and grief (LEAD): protocol for a longitudinal observational study.

Joan M Griffin, Lauren R Bangerter, Kyungmin Kim, Yin Liu, Alexander Batthyány, Robyn W Birkeland, Terry L Frangiosa, Rachel L Nosheny, Joseph Gaugler, Maria I Lapid

Abstract readClinical Trial Protocol
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Joan M GriffinDivision of Health Care Delivery Research and Kern Center for the Science of Healthcare Delivery, Mayo Clinic, Rochester, Minnesota, USA Griffin.Joan@mayo.edu.ORCID http://orcid.org/0000-0001-8120-3229
Lauren R BangerterMedStar Health Research Institute, Columbia, Maryland, USA.
Kyungmin KimDepartment of Child Development and Family Studies, Seoul National University, Seoul, Korea (the Republic of).ORCID http://orcid.org/0000-0002-0135-4367
Yin LiuDepartment of Human Development and Family Studies, Utah State University, Logan, Utah, USA.
Alexander BatthyányResearch Institute for Theoretical Psychology and Personalist Studies, Pazmany Peter Katolikus Egyetem, Budapest, Hungary.
Robyn W BirkelandDepartment of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, Minnesota, USA.
Terry L FrangiosaUsAgainstAlzheimer's, Washington, District of Columbia, USA.
Rachel L NoshenyDepartment of Psychiatry and Behavioral Sciences, University of California San Francisco, San Francisco, California, USA.
Joseph GauglerDepartment of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, Minnesota, USA.
Maria I LapidDepartment of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.

Funding

The Brain Health Registry for facilitating interdisciplinary aging researchR33AG062867 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI NOSHENY, RACHEL LAUREN · 2020 to 2024
$3.2M
NIA NIH HHS R33 AG062867
6 · The paper itself

Abstract

introductionAlzheimer's disease and related dementias (ADRD) are conditions with progressive cognitive decline. Still, people living with late-stage ADRD (PLWD) have been reported to exhibit transient recovery of communication or behavioural abilities that had seemingly been lost. These lucid episodes (LEs) are underinvestigated and poorly understood. This study aims to advance scientific understanding of the incidence, prevalence and predictors of LEs and assess from family caregivers if LEs are associated with changes they make in care planning or experiences with burden, distress or grief.

methodsThis study recruited 545 caregivers from five ADRD-related registries in the USA. Eligibility included caregivers over 18 years who currently provide care to someone with moderate to very severe ADRD and can complete online questionnaires. Using a longitudinal observational study design, consented caregivers will be assessed monthly for 1 year using online questionnaires that inquire about witnessing LEs. If witnessed, the context and content of the LE is reported. Changes in caregiver decision-making about care for the PLWD, and caregiver burden, distress and grief are assessed at baseline, 6 and 12 months. ANALYSIS: Analysis of baseline data will assess descriptive aspects of LEs that are currently unknown (eg, prevalence, content, antecedents, duration). Longitudinal analysis will examine the incidence of LEs, characteristics of PLWD and caregivers that are predictors of episodes, and the associations between LEs and caregiver outcomes (eg, burden, distress, grief). ETHICS AND DISSEMINATION: This study is being conducted in accordance with all Federal Policies for the Protection of Human Subjects. The protocol has been approved by the Mayo Clinic Institutional Review Board (ID 22-006861). Findings will be presented at scientific conferences and disseminated through journal publications and outreach efforts with collaborating partners invested in brain health and caregiver support.

Indexed as

Alzheimer DiseaseCaregiversDementiaGriefStress, PsychologicalAgedFemaleHumansLongitudinal StudiesMaleObservational Studies as TopicSurveys and QuestionnairesCaregiversDelirium & cognitive disordersDementiaObservational Study

Identifiers

PMID40645625
PMCPMC12248201

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.