Evidence map›Paper›PMID 39808391›Full record

Observational studyJournal of general internal medicine2025

Dementia Diagnosis Unawareness and Caregiver Burden in a Multi-ethnic Cohort.

Josh Martins-Caulfield, Roshanak Mehdipanah, Emily M Briceño, Wen Chang, Steven G Heeringa, Xavier F Gonzales, Deborah A Levine, Kenneth M Langa, Darin B Zahuranec, Nelda Garcia and 1 more

Registry-linked trialAbstract readObservational Study
In one paragraph

Observational study in Journal of general internal medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03403257 (Brain Attack Surveillance in Corpus Christi--Cognitive), which is not on this 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.

NCT03403257 completednot on this map

Brain Attack Surveillance in Corpus Christi--Cognitive (BASIC-Cognitive)

TypeobservationalSponsorUniversity of MichiganRan2018 to 2026Enrolled634ConditionsDementia, Dementia Alzheimers, Dementia, Vascular, Dementia, MixedArmsNo interventions
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

11 authors.

Josh Martins-CaulfieldDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Roshanak MehdipanahDepartment of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA.
Emily M BriceñoDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Wen ChangInstitute for Social Research, University of Michigan, Ann Arbor, MI, USA.
Steven G HeeringaInstitute for Social Research, University of Michigan, Ann Arbor, MI, USA.
Xavier F GonzalesDepartment of Life Sciences, Texas A&M University, Corpus Christi, TX, USA.
Deborah A LevineDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Kenneth M LangaInstitute for Social Research, University of Michigan, Ann Arbor, MI, USA.
Darin B ZahuranecDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Nelda GarciaDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA.
Lewis B MorgensternDepartment of Neurology, University of Michigan Medical School, Ann Arbor, MI, USA. lmorgens@umich.edu.ORCID 0000-0002-5787-592X

Funding

Research Education CoreP30AG024824 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Neil Alexander · 2004 to 2026
$29.2M
Cognitive impairment in Mexican Americans: a population-based studyR01NS100687 · NINDS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI MORGENSTERN, LEWIS B · 2017 to 2021
$7.4M
Critical Decision Making in Alzheimer's Disease and Related Dementias in Mexican AmericansR01AG069148 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI MORGENSTERN, LEWIS B, ZAHURANEC, DARIN B · 2020 to 2024
$3.5M
Measurement of cognition and functional decline in Latinx older adults for detection of Alzheimer’s Disease and Related Dementias: A mixed-methods approachK23AG080035 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Emily Marie Briceno · 2023 to 2026
$767k
NIA NIH HHS K23 AG080035NIA NIH HHS P30 AG024824NIA NIH HHS R01 AG069148NIH HHS R01 AG069148NIH HHS R01 NS100687NINDS NIH HHS R01 NS100687
6 · The paper itself

Abstract

backgroundPrevious reports suggest patient and caregiver lack of awareness of dementia. Little is known about how this varies by ethnicity and how informal (family) caregiver burden is associated with knowing a dementia diagnosis.

objectiveTo investigate whether participants with probable dementia were aware of a diagnosis provided by a physician and how this differed among Mexican American and non-Hispanic White participants; whether having a primary care physician was associated with dementia diagnosis unawareness; and the association of dementia diagnosis unawareness with caregiver burden.

methodsThis was a population-based cohort study in Nueces County, Texas. Participants who scored less than 20 on the Montreal Cognitive Assessment (MoCA) were classified as having probable dementia. Diagnosis unawareness was defined as participants with probable dementia who had not been told that diagnosis by a healthcare provider. Logistic regression models examined the association of ethnicity and dementia diagnosis unawareness. A negative binomial regression was used to assess the association of dementia diagnosis unawareness and caregiver burden.

resultsEighty-one percent of eligible participants were not aware of a dementia diagnosis. Mexican American participants (MAP) were more likely to be unaware of a diagnosis (85%, 95% CI 81-89%) than non-Hispanic white participants (NHWP) (68%, 95% CI 58-75%). Only 6.6% of the participants with probable dementia had no primary care provider, with no observed association between diagnosis unawareness and lack of primary care. Diagnosis unawareness was not associated with caregiver burden (IRR = 0.93, 95% CI 0.77-1.14) but was associated with lower MoCA score (IRR = 0.98, 95% CI 0.96-1.00) and greater physical impairment (IRR = 1.06, 95% CI 1.03-1.10).

conclusionDementia diagnosis unawareness was very high in this community. MAPs are more likely to be unaware of a diagnosis than NHWPs. Lack of access to primary care and caregiver burden were not associated with dementia diagnosis unawareness.

trial registrationStudy registered at clinicaltrials.gov NCT03403257.

Indexed as

Caregiver BurdenCaregiversDementiaHealth Knowledge, Attitudes, PracticeAgedAged, 80 and overAwarenessCohort StudiesCost of IllnessFemaleHumansMaleMexican AmericansMiddle AgedTexasWhiteCaregivingDementiaHealth equityHispanicPrimary care

Identifiers

PMID39808391
PMCPMC12343394

What OpenQuestion holds

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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.