Trial reportAlzheimer disease and associated disorders
Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials?
Trial report in Alzheimer disease and associated disorders. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
36 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review.BMC medical ethics · 2021Pooled it
- Study partners' views on remuneration in longitudinal Alzheimer's disease research.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2025Article
- Characterizing the Research Participant Recruitment Funnel for Alzheimer's Secondary Prevention Trials: Results from A National Survey of U.S. Adults.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2025Article
- Understanding participants' attitudes toward research in the CARE registry.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Increasing representation of Asian American, Native Hawaiian, and Pacific Islander communities in aging, dementia, and caregiving research: An update from the CARE registry.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Barriers and Facilitators to Participation in Clinical Trials Related to Familial Frontotemporal Dementia: A Qualitative Study.Molecular genetics & genomic medicine · 2024Article
- Perceptions about dementia clinical trials among underrepresented populations: a nationally representative survey of U.S. dementia caregivers.Alzheimer's research & therapy · 2024Article
- Perceptions about dementia clinical trials among underrepresented populations: A nationally representative survey of U.S. dementia caregivers.Research square · 2024Article
- Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Alzheimer's Disease Biomarker Decision-Making among Patients with Mild Cognitive Impairment and Their Care Partners.The journal of prevention of Alzheimer's disease · 2024Article
- Study Partner Type and Adverse Event Reporting in Mild-to-Moderate Alzheimer's Disease Clinical Trials.Journal of Alzheimer's disease : JAD · 2024Article
- Designing Inclusive Qualitative Research with Carers of People Living with Dementia: Methodological Insights.Healthcare (Basel, Switzerland) · 2023Article
- Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study.The patient · 2023Article
- Recommendations to address key recruitment challenges of Alzheimer's disease clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Review
- Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial.Frontiers in pain research (Lausanne, Switzerland) · 2023Article
- Retention of Study Partners in Longitudinal Studies of Alzheimer Disease.Journal of Alzheimer's disease : JAD · 2023Article
- Research attitudes in families of individuals with Down syndrome: importance for clinical trials.Alzheimer's research & therapy · 2022Article
- Gamete and embryo donation for research: what might shape the willingness to donate among gamete donors and recipients?Journal of assisted reproduction and genetics · 2022Article
- Recruiting Persons with Dementia and Caregivers in a Clinical Trial: Dyads Perceptions.Western journal of nursing research · 2022Article
- The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations.Alzheimer's & dementia (New York, N. Y.) · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
objectivesMost Alzheimer disease (AD) caregivers are not spouses and yet most AD dementia trials enroll spousal study partners. This study examines the association between caregiver relationship to the patient and willingness to enroll in an AD clinical trial and how caregiver burden and research attitudes modify willingness.
designInterviews with 103 AD caregivers who met criteria for ability to serve as a study partner.
resultsA total of 54% of caregivers were spouses or domestic partners and the remaining were adult children. Willingness to enroll a patient in a clinical trial was associated with being a spouse [odds ratio (OR)=2.53, P=0.01], increasing age (OR=1.39, P=0.01), and increasing scores on the Research Attitudes Questionnaire (OR=1.39, P<0.001). No measures of caregiver burden or patient health were significant predictors of willingness. In multivariate models both research attitudes (OR=1.37, P<0.001) and being a spouse, as opposed to an adult child, (OR=2.06, P=0.048) were independently associated with willingness to participate.
conclusionsSpousal caregivers had both a higher willingness to participate and a more positive attitude toward research. Caregiver burden had no association with willingness to participate. The strongest predictor of willingness was research attitudes.
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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.