Observational studyJournal of general internal medicine2026
Dementia Family Caregivers' Involvement and Perceived Challenges in Health Care Interactions: Informing the GUIDE Model.
Observational study in Journal of general internal medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 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
3 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Health Care-Related Tasks of Informal Dementia Caregivers in the U.S.: A Systematic Review with Narrative Synthesis.Inquiry : a journal of medical care organization, provision and financingPooled it
- Family Caregivers and the Need to Navigate Healthcare for People with Alzheimer's Disease and Related Dementias.Journal of general internal medicine · 2026Article
- Estimation of Montreal Cognitive Assessment Scores Using Caregiver Reports and Demographics: A Model Development Study.Journal of clinical medicine · 2026Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHealth care interaction tasks, such as making appointments and coordinating care, are vital but often overlooked caregiver tasks. The Guiding an Improved Dementia Experience (GUIDE) Model began in 2024 and aims to support dementia family caregivers through care coordination.
objectiveThis observational study described the characteristics of dementia family caregivers and their perceived challenges in performing health care interaction tasks before the start of the GUIDE Model.
designCross-sectional nationally representative survey.
participantsPrimary family caregivers for those with probable dementia from the National Study of Caregiving (NSOC) Round 13 and the National Health and Aging Trends Study (NHATS). We also conducted subgroup analyses examining caregivers' difficulty performing health care interaction tasks. MAIN MEASURES: Dementia family caregivers were asked whether they had helped with any of the nine health care interaction tasks. Only caregivers who answered yes to the task questions were asked about their difficulty performing the respective health care interaction tasks. We compared the characteristics of caregivers who performed versus did not perform these tasks, as well as those who reported any difficulty versus no difficulty. KEY
resultsOur study included 467 caregivers. Most (92.5%) caregivers performed at least one health care interaction task. The most frequently performed health care interaction tasks were speaking to providers (82.2%), making appointments (79.0%), and sitting in on doctor appointments (68.4%). The tasks caregivers rated as being most difficult were transitioning care after a hospital stay (58.9%), coordinating care (43.0%), and handling insurance matters (39.8%). Over half of caregivers assisting after an overnight hospital stay received post-hospital training (58.2%).
conclusionsFamily caregivers commonly perform health care interaction tasks, and their difficulties, particularly transitioning care after a hospital stay, should be recognized and assessed across care settings and providers in the GUIDE Model.
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