5 Ways Caregivers and Older Adults Can Reduce Gaps in Care

From delayed diagnoses to missed follow-up care, health care navigation can become overwhelming. Here’s how to stay informed

Leah Howe,

AARP

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Published June 12, 2026

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Key takeaways

Care breakdowns often occur at handoffs, so clarifying next steps and responsibilities with your provider before leaving appointments helps prevent gaps.
Tracking tests, referrals and symptoms can surface delays early and reduce the risk of missed or late diagnoses.
Organized records and clear medication lists support safer transitions and reduce confusion after care changes.

Navigating health care can feel like a full-time job for patients and caregivers. Between referrals, follow-up appointments, medication management, health portals and provider communication, it’s easy to feel overwhelmed by the amount of information to manage.

These challenges can become even more difficult for caregivers managing their own health care and that of a loved one, including those with multiple conditions or navigating transportation, financial or technology barriers. According to the Centers for Disease Control, nearly 9 out of 10 adults struggle to understand and use health information effectively, a challenge shaped not only by individual literacy but also by how health care systems share complex medical information.

As a nurse and patient advocate, I regularly see older adults and caregivers grappling to manage this volume of information and coordination — and not for lack of trying.

Here are five common failure points in health care and strategies to help prevent aspects of your care from falling through the cracks.

1. Poor communication between providers

Patients and caregivers sometimes bridge communication between providers. Because health care systems often involve multiple handoffs between provider offices, schedulers and insurance companies, it can be unclear what happens next and who is responsible for the next step.

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Here are a few ways to reduce communication gaps:

Before appointments, prepare a brief agenda and bring an updated medication and provider list to help keep communication clear across your care team.
Prior to leaving an appointment, clarify next steps, who is responsible for follow-up care or referrals and when to check back if you don’t hear anything.
Request a visit summary and confirm notes are shared with your care team.

2. Missed or delayed diagnoses

One of the more serious breakdowns in health care navigation occurs when diagnoses are missed or delayed. These situations can leave patients and caregivers feeling frightened or powerless.

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Research on diagnostic errors and patient safety indicates that delays can occur for many reasons, including communication failures and gaps in care coordination.

Here are some ways you can reduce the risk of missed or delayed diagnoses:

Ask your provider, “What else could this be?” If symptoms remain concerning or unresolved, ask, “Is additional testing or specialist follow-up needed?”
Track pending labs, imaging, and referrals, and follow up if communication is delayed. Do not assume no news is good news.
Review post-visit notes and test results carefully
Seek a second opinion if symptoms persist or remain unaddressed

Alia Lutz, a nurse and patient advocate in Youngsville, North Carolina, recommends keeping a symptom tracker with dates, symptom patterns, triggers and changes over time. “Never leave ailments to the last minute,” she says. She also advises patients not to use the internet for medical advice. “There is a lot of untrustworthy information that is not peer-reviewed, and there is a lack of credibility. It can be the same writer on multiple sites, so always be critical of what AI is putting out.”

3. Hospital to home or facility transitions

A hospital discharge can be a vulnerable transition. Whether returning home, transferring to rehabilitation or moving to another facility, patients and caregivers are often expected to manage new medications, follow-up appointments, in-home support, discharge instructions and ongoing symptoms all at once.

According to patient safety research published by the National Library of Medicine, poorly coordinated transitions of care can increase the risk of medication errors, missed follow-up care and hospital readmission.

Before discharge, ask:

What medications have changed, and has my primary care provider been updated?
Have home health or other support referrals been coordinated if needed?
What symptoms require follow-up, and when should I seek urgent care?
Who is responsible for my next steps, and has follow-up already been arranged?

4. Information overload and organizing your records

Managing health information often means managing digital tools as well. Patients and caregivers may find themselves juggling multiple portals across different organizations, making it more difficult to track appointments, medications and records.

While technology barriers are real, patient portals can help keep health information in one place and support engagement with your care. Portals are not the only option, and a different system for organizing records may work better for some people. If portals feel overwhelming, ask provider offices for paper copies of key records, submita formal medical records request when needed,and keep records in a binder or scanned intoa digital folder. For those juggling multiple portals, it may be worth considering ahealth record appthat gathersinformation from multiple sourcesin one place.

Here are some ways to reduce digital overload:

Ask about portal training, help desks or educational resources available through your health care organization
Set up caregiver or proxy access so a trusted person can manage information
Download important records such as medication lists, lab results and imaging reports for easy access

5. Medication confusion and management

Medication routines can be complicated when multiple providers are involved. Adjustments to medication after hospitalizations, specialist visits or new diagnoses often lead to uncertainty about what changed and which medications should still be taken.

Lutz suggests that if you “have a lot of medications, keep track of them in a calendar and time everything out — have reminders posted in places you look every day.”

Here are some other ways to build confidence and reduce medication confusion:

Ask what each medication is for and whether it is intended for short- or long-term use.
Clarify medication changes after hospitalizations or specialist appointments.
Ask about interactions with supplements and over-the-counter medications.
Ask whether a medication can be stopped suddenly or requires taper instructions.
Review medication instructions and ask questions if anything is unclear.

While health care systems are complex and often feel overwhelming, patients and caregivers do not have to navigate them alone, nor do they have to do everything perfectly to make a meaningful difference. Sometimes, small actions, like asking one more question, following up on results or using an available resource, keep care moving in the right direction and prevent details from falling through the cracks.

Underused health care resources

Patient advocates, navigators and care coordinators: Many insurers and health care organizations provide access to patient advocates, health navigators, and care coordinators who can organize care and connect patients with resources. Ask your insurer or care team whether these services are available.

SHIP counselors: State Health Insurance Assistance Programs (SHIP) offer free counseling to help Medicare beneficiaries compare plans, understand benefits, and identify financial assistance resources.

Release of Information Forms (ROI): A signed release-of-information form allows patients to authorize a trusted person to obtain medical information and assist with care coordination, even if they are not a health care proxy or power of attorney.

Medication review services: Pharmacists can review medications for interactions, duplications, side effects, and help explain how medications should be used.

Doctor visit question checklist: It can be difficult to remember questions during appointments. Printable visit checklists can help you prepare for appointments and keep track of next steps. Link to “Ask your Doctor” checklist.

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The key takeaways were created with the assistance of generative AI. An AARP editor reviewed and refined the content for accuracy and clarity.

Leah Howe is a registered nurse and patient advocate who writes about mental health, care navigation and whole-person wellness. Her work has also appeared with the National Alliance on Mental Illness and other wellness organizations.