Taking Care of the Caregivers: A Need for Patient-Centered Research

Nearly 50 million people in the United States serve as unpaid caregivers to family or friends. Our country’s aging population and the increasing prevalence and complexity of chronic disease are combining to place caregiving responsibilities on more people, and for longer — often bringing challenges to caregivers’ well-being.

While many caregivers report that taking care of relatives and friends can be a source of joy, this work can also take a toll over time. A recent report finds that many indicators of mental and physical health have worsened for caregivers in recent years.

Caregiving can also exact an emotional and financial toll. At PCORI’s 2022 Annual Meeting, we heard compelling firsthand evidence of this burden on families, as keynote speaker Ashley Valentine described her family’s heroic efforts to take care of her brother, whose sickle cell disease required dozens of medical appointments and pharmacy visits each year, endless insurance administration and care coordination and out-of-pocket expenses of more than $15,000 a year.

A Comprehensive, Holistic Approach to Caregiving Burden

PCORI has approached this caregiving crisis in our hallmark holistic way. PCORI advisory panels and many other stakeholders have provided extensive input that the caregiving burden is an area that would benefit from patient-centered comparative clinical effectiveness research (CER).

Reducing caregiving burden and improving caregiver quality of life has been an explicit goal in PCORI’s funding opportunities related to the Topic Theme of promoting health for older adults. The consideration of the full range of patient-centered costs and economic burdens, on both patients and caregivers, is now part of PCORI funding announcements. Multiple PCORI Engagement Award projects are identifying caregivers’ research priorities and building capacity for caregivers and their families to engage in CER.

Meeting the needs of caregivers does not have a one-size-fits-all approach. And the requirements of caregivers can change greatly across the time one is a caregiver, depending on the circumstances. PCORI-funded CER projects are addressing some of the highest burden issues for caregivers. Stress is a common theme in our growing portfolio of funded studies.

For example, a randomized controlled trial compared ways to alleviate stress for caregivers of patients who had had a stem cell transplant to treat cancer – which often has debilitating side effects and can leave patients needing significant care at home. The study found that a stress management program supported by social workers was more effective in alleviating symptoms of stress and depression than standard services like hospital support groups and educational materials.

Another area of CER funding is caregiving for patients with dementia, which can be particularly demanding due to the behavioral symptoms many dementia patients exhibit. A PCORI-funded large randomized controlled trial that has just completed recruitment aims to find answers to how best to reduce stress among caregivers of dementia patients. The D-CARE: The Dementia Care Study, funded by both PCORI and the National Institute on Aging, will compare three care models to reduce stress among caregivers and decrease behavioral symptoms of individuals with dementia, with outcomes including caregiver strain and severity of depression.

Dementia is also a health condition with significant economic impact. Caregiving for patients of all kinds can carry a significant economic cost in lost wages and interrupted careers, and this is particularly true for women, who constitute about three-quarters of volunteer caregivers.

In response, PCORI's Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research encourages, as appropriate, the collection of patient-centered burdens and economic outcomes data in all relevant CER studies.

While caregivers have long been key in providing input on the needs of patients, PCORI is funding a growing number of engagement projects that focus on the specific needs of caregivers themselves. These projects are helping us learn more about the needs of caregivers to inform future CER funding or disseminating evidence from PCORI-funded studies that can help alleviate caregivers’ burden. The engagement projects often address particular cultural communities, such as this project focused on Korean American caregivers of patients with Alzheimer’s disease and related dementias (ADRD), which addresses the particular health risks of Korean American caregivers due to cultural norms related to caring for older parents.

Making Progress Together

The burden of caregiving is likely to become only more pressing as the nation’s demographics continue to shift. The over-65 population is growing at its fastest rate in a century and may comprise more than 25 percent of the population by 2060, placing even more strain on unpaid caregivers.

PCORI has awarded more than $100 million in funding for CER studies on caregiving. We will continue to work across the PCORI community to identify critical evidence gaps and fund patient-centered CER to generate evidence that helps equip patients and caregivers with information to help manage the responsibilities and impact of caring for loved ones.

Thank you to all who have contributed to this effort to date and PCORI’s work more broadly. If you are interested in getting involved with PCORI, on this or any other topic, please engage with us!