Why Clinical Trials Rely on Caregivers

Finding the right clinical trial takes time, but caregivers can make participation possible through coordination and ongoing support

Paul Wynn,

AARP

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Published May 01, 2026

Supported by his wife Charlotte, Bob Ehlers entered an Alzheimer's clinical trial hoping to preserve his memory and abilities while helping to advance research.

Jesse Rieser

Key takeaways

Online resources are increasingly providing information about clinical trials and help individuals and families identify appropriate options.
Caregivers are essential to coordinating logistics and supporting treatment adherence and strengthening day-to-day participation.
Many trials offer travel reimbursement, flexible scheduling and remote visits to help make trial participation more practical.

After watching Alzheimer’s disease steal the memories and independence of several of her relatives, Julie and Ron Moore of Irvine, California, knew the diagnosis they feared might one day arrive. It did on March 21, 2024, when Julie, 56, learned she had Alzheimer’s disease. Rather than retreat, the couple chose action.

They turned to clinical trials not only as a chance to slow the disease, but as a way to reclaim hope and help shape a better future for families like theirs. Julie, also living with epilepsy and a family history of stroke and heart disease, enrolled in a study with an oral drug, preferring a pill over infusion-based treatments. With Ron, 60, coordinating appointments, transportation and medication reminders, the couple came to see research participation as a way to support future generations, especially for their 23-year-old daughter, who may one day face the same inherited risk.

“As her caregiver, I see it as my responsibility to help Julie pursue what matters to her. If being in a clinical trial gives her hope, purpose and a chance to help others, then my job is to help make that possible," says Ron.

Missing conversations about clinical trials

Moore's participation in a study is the exception, not the rule. Clinical trial participation has remained relatively stagnant for years, estimated at about 3 to 5 percent of the U.S. population.

“Clinical trial information is often spread across many different sources, making it hard for patients and families to know where to start,” says Madeleine Pagel, a patient navigator with myTomorrows, a health tech company helping patients and doctors discover treatment options by connecting them with the biopharma companies developing them. “For many people, the process can feel overwhelming at a time when they are already managing a lot.”

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Clinical trials can be emotionally challenging for individuals and their caregivers, as study participants may be taken off a study even when a treatment seems effective, highlighting the inherent unpredictability and strain of trial participation.

There’s a persistent gap between the public interest in clinical trials and how often the topic is raised in conversations with doctors. A 2023 survey by Research!America found an overwhelming majority of Americans believe doctors should routinely discuss clinical trial options as part of standard care. Yet only 36 percent of respondents said a physician had ever raised the subject with them.

Keith Whyte falls into that gap. The 66-year-old from Taylors, South Carolina, who is living with mild cognitive impairment, says his doctor did not present him with any clinical trial options, even after his treatment course became problematic and risky. Whyte experienced serious complications following treatment, including brain bleeds that led to the suspension of his infusions. Later, he developed deep vein thrombosis — a blood clot — requiring immediate treatment and months of blood-thinning medication.

Those neurological and vascular events halted his infusion-based care and prompted a reassessment of his treatment plan. His neurologist has indicated that therapy may be revisited once he is safely off anticoagulants, but for now, his care remains in a holding pattern. His wife, Ronni Whyte, 58, a nurse, says she is doing her own online research to see which studies are available. “If the right study comes along, with clear information about the risks and benefits, we would absolutely consider it,” she says. “Everything we do now is about holding on to Keith, keeping him here with us for as much time as we can.”

Anna Carner (right) has help from her husband, Pino, and twin sister, Mary, to identify the right cancer clinical trial for her to join.

Courtesy P.J. Fetner

In search of clinical trials

Finding the right clinical trial is rarely simple or straightforward. For Anna Carner, 83, of northern Virginia, the search has been uncertain and longer than expected, even with steady support from her husband, Pino Blangiforti, and her twin sister, Mary Forte, both 83. Diagnosed with glioblastoma in 2024 after losing peripheral vision in her right eye, Carner was initially accepted into a cancer study at a local cancer center, only to learn later that she did not meet the final eligibility criteria. “We were told she qualified, and then on the way there, we got a call saying she didn’t. That was crushing,” Blangiforti says.

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Carner’s family helped search for other studies at Johns Hopkins Medical Center, even in faraway locations like the Mayo Clinic in Minnesota and the University of California in Los Angeles. Recently, they found a potential fit for a study at the University of Virginia. “You can’t give up,” Blangiforti says. “We keep looking at every option, even when it’s exhausting.”

Unlike Carner's experience, marked by shifting eligibility and uncertainty, Bob Ehlers entry into a clinical trial came through early research. Ehlers, was 58 when he first noticed troubling memory lapses while working as a vice president at a semiconductor software company. Concerned about both his health and the potential impact a diagnosis could have on his career, he began researching treatment options. That search ultimately led him to a clinical trial, where he committed to a years-long process that included regular infusions, brain scans, cognitive testing and later self-injections of the study medication.

Now 65, Ehlers remains active, travels with his wife Charlotte, volunteers as a mentor to small-business owners and supports Alzheimer’s research advocacy. "Whether it's through a clinical trial, I make a point to keep my mind engaged through technology, learning new skills and music."

Common questions about clinical trials

Clinical trials can feel complex at first glance, but most participation decisions come down to a handful of practical questions. Understanding these basics can help individuals and caregivers move from uncertainty to a clearer sense of whether a trial is the right option and what life inside a study may realistically look like.

Ron Moore supported his wife, Julie, in taking part in a clinical trial for Alzheimer’s disease.

Courtesy Ron Moore

Where to find clinical trials?

Most adults turn to their doctors to learn about clinical trials. While primary care doctors may not always be up to date on the latest studies, specialists are often more closely connected to ongoing research in their fields.

In a National Cancer Institute survey, about a quarter of respondents said they would use online searches to find a clinical trial. Other options to find trials include reaching out to health organizations and disease-specific patient groups.

“Nowadays, people want health information that is easy to access, easy to understand and readily available when they need it,” says Pagel. “Online tools that help to identify relevant trials can help simplify a process that has traditionally been time-consuming and confusing. They can also help patients and caregivers feel more informed and empowered when going into discussions with their health care team about clinical trial participation.”

The federal government’s ClinicalTrials.gov remains the most comprehensive clinical trial finder. Other online resources for finding trials include:

Alzheimer’s Association: Trial Match
American Cancer Society: ACS ACTS
Michael J. Fox Parkinson’s Foundation: Fox Trial Finder
National Institute of Neurological Disorders and Stroke: NeuroNext Network

What are the stages of research?

Once a scientific discovery moves out of the lab, researchers begin testing it in people. This starts with phase 1 trials, which focus on safety, then progresses to phase 2 and, finally, phase 3, where researchers learn more about how well the treatment works. If those stages are successful, the drug can be submitted to the U.S. Food and Drug Administration for review.

Here’s a simple breakdown of the three main phases of clinical trials.

What to expect when signing up?

Informed-consent documents serve as the foundational guide for clinical trial participation. They explain what a study aims to accomplish and what participation will look like in practice, offering individuals and caregivers a fuller picture of what enrollment entails. The documents will explain the study’s primary and secondary end points — the main outcomes a trial is designed to measure.

Caregivers and patients should closely review key sections detailing potential side effects, prior safety data and the investigational drug’s mechanism of action, says Dr. Lisa Lancaster, who has led several lung disease studies through Vanderbilt University Medical Center in Nashville.

“Understanding the study’s goals, prior safety and efficacy results, and how the treatment is expected to work is considered essential before making a decision to participate,” Lancaster adds.

Consent documents often contain critical logistical information, such as the number of required visits, whether the therapy is taken orally or by infusion, and any expectations for monitoring or symptom-tracking diaries, commonly used by caregivers in Alzheimer’s and dementia studies to track changes in their loved one's behavior over time. Families should also consider how long the study lasts and what happens if the study ends after several months while the treatment appears to be helping. Many trials, especially in cancer, have strict eligibility rules based on prior treatments with certain medications and surgery.

What is the cost of clinical trials?

Most trials cover all study-related expenses, including the investigational drug, lab work, imaging, exams and doctor visits tied directly to the research. Study sponsors — whether they’re pharmaceutical companies, academic medical centers or government agencies — absorb these costs as part of the research. Beyond core medical expenses, many trials reimburse participants for other costs, such as mileage, parking, tolls and, in some cases, public transportation or rideshare services such as Uber or Lyft. For those traveling longer distances, certain trials may cover airfare, lodging and meals, particularly in later-phase or rare-disease studies where participants are geographically dispersed.

“There’s an effort to balance the time burden on patients and caregivers with some reimbursement, but it’s not meant to replace lost wages or serve as a financial incentive,” says Dr. Page B. Pennell, chair of neurology at the University of Pittsburgh School of Medicine.

How much flexibility is there with trial participation?

The practical realities of work and caregiving responsibilities can make clinical trial participation difficult without built-in flexibility. As a result, many studies are adapting to better accommodate individuals and their families.

“Some clinical trials will schedule appointments in the evening or on weekends, and some studies allow for nurses and other providers to come to people’s homes and take biological samples and do assessments,” says Pennell. These options, along with virtual visits and, in some cases, remote monitoring, are designed to reduce disruptions to daily life and make participation more feasible for those balancing jobs, caregiving duties and other family obligations.

How can caregivers best provide support during a clinical trial?

Besides providing emotional support, caregivers often play a central role throughout a clinical trial. “Caregivers help to research options, organize care, coordinate travel and support day-to-day needs at home,” says Pagel. Caregivers also act as a built-in safety check, helping confirm medications are taken correctly and ensure diaries tracking symptoms and side effects are completed in real time. “That’s what allows us to determine whether the treatment is working and whether there is a side effect from treatment," explains Pennell.

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Paul Wynn, a veteran health care writer, has spent over a decade immersed in the caregiving community, both as a family caregiver and as a journalist covering caregiving issues for national publications.