Electronic Health Records, the digital clinic charts used for dementia research, studied mainly older primary-care patients in 2026. Adult children were the most recorded caregivers when relationship data existed, but children living elsewhere and Black and Hispanic patients were often missing. For an adult child, this matters when you seek information, visit access, or study referral. If the chart names you only as an emergency contact, research may not count you as a caregiver at all.
Medical information disclaimer: This article is for general educational purposes only and does not provide medical advice, diagnosis, or treatment. Always consult a physician or other qualified health professional about symptoms, medications, tests, or treatment decisions.
Table of Contents
- When are adult children counted?
- Who was screened before diagnosis?
- Who fills the largest datasets?
- What can adult children do at the clinic?
When are adult children counted?
JMIR Aging reported in 2025 that adult children were the main primary caregivers where relationship data existed in a University of Connecticut outpatient group. Among 291 patients with relation data from 581 outpatients, 185 cases were adult children, including 135 daughters and 50 sons, followed by 65 spouses, described in the UConn caregiver analysis. That visibility depends on notes, not check boxes.
Authors of the Kaiser Permanente Colorado study of 789 patients age 60 and older living with dementia found 95% had a caregiver name in structured contact fields, but said unstructured notes must be mined to find caregivers outside the home such as adult children, described in the Kaiser Permanente Colorado caregiver study. One system found only 26% of 4,138 eligible persons with dementia had a care partner named. Structured contact tabs often list names without marking caregiver role, so a daughter or son who does not live with the patient stays invisible.
Who was screened before diagnosis?
The eRADAR pragmatic trials screened records for primary-care patients age 65 and older with no dementia diagnosis or dementia medication use. Screening took place at five Kaiser Permanente Washington clinics and six UCSF clinics to target high-risk patients.
For adult children, this means a parent with memory or risk concerns may be flagged before dementia is diagnosed. A screening flag is not a diagnosis, but it can prompt formal testing, safety planning, and referral.
Who fills the largest datasets?
The M3AD Real-World Data Metaplatform pooled records from about 60,000 people with Alzheimer disease or related dementias across three U.S. cities to track multimorbidity trajectories. Large pools show complex illness paths, but they still reflect who uses those health systems. Treatment access was narrow and uneven in a Vizient record set from more than 300 U.S.
centers covering 1,198,362 patients with mild cognitive impairment or dementia. Medscape reported that only 2,427 patients received antiamyloid drugs, with sharply lower odds for non-Hispanic Black patients and Hispanic patients versus White patients, described in the Vizient antiamyloid disparity report. Enrollment efforts have not yet fixed the gap. NIH reported June 30, 2026 that All of Us exceeds 645,000 participants with 86% from historically underrepresented groups, yet a dementia APOE analysis still included 60,388 non-Hispanic White versus 14,937 Black and 9,784 Hispanic or Latino adults age 60 and older, described in the NIH All of Us update. ADNI-4 plans about 1,500 participants ages 55 to 90 across normal cognition, mild impairment, and mild dementia cohorts, requiring 50 to 60% of new enrollees be Black, Latinx, low-education, or other groups missed in earlier waves.
What can adult children do at the clinic?
Ask the practice to record your role in words, not only your phone number. A short note such as daughter-caregiver, helps with daily decisions, or son-manages medications, travels better through records than a name alone.
Check after the visit that the after-visit summary lists you correctly. If you live elsewhere, ask the office to add a second contact address and preferred call time.
- Ask staff to add caregiver and relationship to the contact record and visit note
- Use the patient portal for care questions so your role appears in messages
- Bring a medication list, safety concerns, and a request for formal cognitive testing
- Ask whether memory studies or high-risk screening programs accept caregiver referral
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