The hidden administrative burden of caregiving: what the data actually shows
Most people picture caregiving as hands-on help — bathing, meals, transportation. But research increasingly documents another layer: the administrative coordination that families perform without training, tools, or a job description. Scheduling across providers. Decoding insurance paperwork. Managing portals. Following up on referrals. Keeping siblings informed. This work is only beginning to be measured, and the data that does exist suggests it's larger than most families anticipate.
The scale of caregiving in the US
The caregiver population has grown substantially over the past decade. According to the 2025 AARP and National Alliance for Caregiving report, approximately 63 million American adults now provide ongoing unpaid care to a family member or friend — a 45% increase from the 43.5 million reported in 2015.1
Of these, roughly 59 million are caring for adults with complex or chronic medical conditions. The work goes well beyond personal assistance:
Seven in ten caregivers report coordinating care across providers and actively monitoring health conditions — work that involves scheduling, communication, and follow-through.1
Nearly two-thirds of caregivers describe their role as emotionally stressful, with higher rates among those managing complex medical situations or coordinating across multiple systems.1
Nearly three in ten caregivers are simultaneously caring for an aging adult and raising children under 18 — compounding the administrative load across two directions.1
The impact extends into the workplace. AARP's 2024 workforce report found that nearly 70% of working caregivers report difficulty balancing their career with caregiving responsibilities. Many reduce hours, decline promotions, or leave the workforce entirely — not because of hands-on care demands, but because of the administrative overhead that can't be contained to evenings and weekends.2
What "coordination" actually looks like
When surveys report that caregivers "coordinate care," it can sound abstract. In practice, coordination is a set of specific, recurring tasks that consume real hours every week. Here's what the work typically includes:
The reality: This is project management — performed without training, without dedicated tools, and without a job description. It runs in the background of a caregiver's existing job, household, and personal life.
The information fragmentation problem
Even with federal mandates for electronic health records and interoperability, health information remains stubbornly siloed in practice. The Office of the National Coordinator for Health Information Technology (ONC) has documented persistent gaps in how information flows between providers and patients:
One in ten patients reported having to redo tests or procedures because results were not available to a provider who needed them — wasting time, money, and sometimes requiring additional physical discomfort.3
One in five patients reported waiting longer than they felt was reasonable to receive test results — a gap that falls on caregivers to chase by calling offices, checking portals, and leaving messages.3
Approximately 8% of patients encountered situations where their chart or medical records could not be located when needed — creating delays in care and forcing families to reconstruct information from memory.3
Despite the promise of electronic health records, the reality for most families is a patchwork of portals, fax-dependent offices, and systems that don't talk to each other. A person seeing a cardiologist, a primary care physician, and an orthopedist at three different health systems may have their records in three separate EHR platforms with no automatic data sharing between them.
For caregivers, this fragmentation isn't an inconvenience — it's a daily operational problem. They become the de facto integration layer: downloading records from one portal, uploading them to another, printing documents for appointments, and verbally relaying information that should flow electronically but doesn't.4
The gender and economic dimension
Caregiving responsibilities are not evenly distributed. Research consistently shows that women bear a disproportionate share of the work — and the economic consequences compound over time.
Who provides the care
Among adults age 50 and older, 32% of women serve as caregivers compared to 22% of men.2 Women are more likely to be the primary coordinator — the person managing appointments, handling paperwork, and serving as the point of contact for providers. When a family designates someone to "handle things," that person is disproportionately a daughter, daughter-in-law, or female spouse.
The economic cost
Women who are caregivers are more likely than men to reduce their work hours, turn down promotions, take leaves of absence, or exit the workforce entirely.2 These decisions have compounding effects: reduced current income, lower Social Security earnings, diminished retirement savings, and increased out-of-pocket caregiving expenses — all hitting at the same time.
The economic impact is not limited to the period of active caregiving. Lost years of earning and saving create gaps that persist into the caregiver's own retirement — making caregiving a financial risk factor that extends decades beyond the caregiving period itself.
Worth noting: Most workplace caregiving accommodations — where they exist — focus on time off for medical appointments or personal care. Almost none address the administrative coordination workload that spills into every workday: the phone calls during lunch, the portal messages between meetings, the insurance appeals that require business-hours availability.
What research says about reducing the burden
Several categories of intervention have shown evidence of reducing caregiver burden. Most, however, focus on the clinical coordination side — what happens between providers — rather than the administrative layer that families manage directly.
Care coordination interventions
Studies on transitional care models (e.g., the Coleman Care Transitions Intervention and the Naylor Transitional Care Model) have shown that structured coordination during hospital-to-home transitions reduces readmissions and improves outcomes. These models assign a coordinator to manage the handoff — something families otherwise do themselves.1
Pharmacist-led medication reconciliation
When a pharmacist reviews and reconciles all of a patient's medications across prescribers, discrepancies are caught earlier and the caregiver's burden of managing multiple prescription sources is reduced. This is especially impactful for patients seeing four or more prescribing providers.
Structured communication tools for families
Research on family meetings, shared care plans, and structured update formats shows reduced conflict and improved caregiver well-being. When everyone sees the same information in the same format, the cycle of "what's happening?" calls and conflicting accounts diminishes.
Technology: portal consolidation and shared care plans
Health IT tools that aggregate portal access or provide a single view of appointments, medications, and results reduce the login-hopping and information-hunting that eat caregiver hours. Shared digital care plans give multiple family members access to the same current information.4
The gap: Most evidence-based interventions address clinical coordination — transitions between facilities, medication management, provider communication. Very little research has focused specifically on reducing the administrative layer that families manage: the scheduling, the insurance paperwork, the referral follow-up, the family communication. This is an area where the burden is well-documented but the solutions are still emerging.
Practical strategies for reducing administrative burden
While systemic solutions develop, individual families can take concrete steps to reduce the friction. These strategies won't eliminate the coordination work, but they can make it more manageable and less likely to depend entirely on one person's memory.
1. Consolidate portal logins in a password manager
Use a password manager (1Password, Bitwarden, or even a shared note) to store every patient portal login, security question, and two-factor authentication method in one place. This way, any authorized family member can access any portal without calling the primary caregiver for the password.
2. Create a single medication list
Maintain one document listing every current medication with dosage, frequency, prescribing provider, and pharmacy. Update it after every appointment. Bring it to every visit. This single artifact prevents more confusion than almost any other step — especially during transitions and emergency visits.
3. Designate one family member as point of contact for providers
When multiple family members call the same office, messages get lost and conflicting information circulates. Choose one person as the designated contact. Put their number on file. Others can stay informed through a shared update — but providers call one person.
4. Use a shared document for tracking open items
A simple shared spreadsheet or note — listing pending referrals, upcoming appointments, insurance questions to resolve, and calls to return — gives everyone visibility into what's in progress. Each item should have an owner, a status, and a next-action date. Google Sheets, Apple Notes, or any shared platform works.
5. Delegate one task area to another family member
Even if one person is the primary coordinator, specific domains can be delegated: pharmacy and refills to one sibling, scheduling to another, family communication updates to a third. Defined ownership reduces the "I assumed someone else was handling it" problem.
6. Set a recurring weekly time for administrative catch-up
Block 60–90 minutes each week to process the backlog: return calls, check portal messages, update the medication list, review upcoming appointments, and send a family update. Without a recurring slot, admin work fragments across every day and never feels "done."
Resources for caregivers
These organizations provide information, tools, and in some cases direct support for family caregivers navigating the administrative side of care:
AARP Caregiving Resource Center
Guides on managing care, legal and financial planning, state-specific resources, and the Care Guide tool for building a personalized caregiving plan.
National Alliance for Caregiving
Research, policy advocacy, and resources focused on improving quality of life for family caregivers. Publishes the "Caregiving in the U.S." report series.
Practical tools including the CareNav assessment, state-by-state services guide, and fact sheets on common caregiving challenges.
Eldercare Locator / Area Agency on Aging
Connects families to local services: respite care, transportation, meal programs, and benefits counseling. Call 1-800-677-1116 or search by zip code.
Medicare.gov — Caregiver Resources
Information on Medicare coverage, what's included in home health benefits, and how to navigate the Medicare system as a family caregiver.
Some families also use administrative coordination services to handle scheduling, referral follow-up, and provider communication — taking the project management off the caregiver's plate while keeping them informed. Averyn Care is one example of this approach, focused specifically on the non-clinical coordination layer.
Free tool: Caregiver Admin Burden Scorecard
A 12-question interactive assessment that scores your coordination burden across four categories — scope, time, system friction, and personal impact. Takes about 3 minutes. Instant results with personalized recommendations.
- Scored across 4 burden categories
- Category-by-category breakdown
- Personalized next-step recommendations
- Shareable results summary
Take the scorecard — free
Answer 12 questions, see your score instantly. Enter your email at the end to unlock the full breakdown and personalized recommendations.
Take the scorecard →Runs in your browser. Nothing is stored until you choose to email your results.
Sources
- AARP and National Alliance for Caregiving. "Caregiving in the United States 2025." aarp.org. 63 million caregivers; 70% coordinate care; 64% report emotional stress; 29% are sandwich caregivers.
- AARP. "Caregiving and the Workforce: A Research Report." 2024. aarp.org. Nearly 70% of working caregivers report difficulty balancing work and caregiving; women disproportionately reduce hours or leave jobs.
- Office of the National Coordinator for Health Information Technology (ONC). "Individuals' Access and Use of Patient Portals and Smartphone Health Apps, 2024." healthit.gov. 10% of patients had to redo tests because results were unavailable; 20% experienced unreasonable delays for results; ~8% had charts that could not be located.
- HealthIT.gov. "Health Information Exchange and Interoperability." Office of the National Coordinator for Health IT. healthit.gov. Overview of persistent gaps in electronic health information exchange despite EHR mandates.
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