As the United States population continues to get older — with adults 65 and over projected to account for 21% of the population by 2030 — the healthcare system must reassess how long-term care is delivered to the elderly and those with severe physical and mental disabilities. Family caregivers increasingly are part of the equation.
While the demand for long-term care increases, how care is provided is also shifting. An AARP study found that 77% of adults ages 50 and older want to age from the comfort of their homes, moving away from traditional nursing homes and increasing the demand for home-based care. Yet with healthcare organizations suffering from a national nurse labor shortage that is expected to get worse over the next few years, patients and their families are now being forced to take matters into their own hands.
Within the last few years, the U.S. has seen an influx of family caregivers, and in 2020, the number of adult family caregivers reached 53 million. To put this number into perspective, there are seven potential caregivers per older adult. However, this number is expected to decrease to only four by 2030 despite steadily increasing demand. With more people in need of care and not enough healthcare workers to provide it, the industry must support and invest in alternative care models to ensure that proper services are available and accessible.
Challenges facing family caregivers
While home-based care — particularly the use of family caregivers — has risen in popularity, problems within the developing system still hinder its success. Turnover within home-based care is extremely high, reaching 64.9% in 2021, with contributing factors including inadequate pay, increased burnout, and lack of training and recognition.
For many, caring for family members can be extremely costly and time-consuming. In the U.S., 36 billion hours of family care go unpaid every year, amounting to about $600 billion. However, some efforts have been made to alleviate caregivers’ financial burden. Some state Medicaid programs allow family members or friends to become paid caregivers.
More recently, states like New Jersey and Florida have made it easier for caregivers to become certified nursing assistants, allowing them to get paid for up to 40 hours of care for a child with significant medical needs — another significant area of home-based care in addition to elderly care.
Along with the financial burden of delivering at-home care, many caregivers experience negative physical and emotional effects, leading to health issues of their own. Many face isolation and loneliness, resulting in between 40-70% suffering from depression. The stress of the role and the nature of caring for individuals who are severely ill or disabled can cause adverse health effects, and 17-35% of caregivers classify their own health as fair to poor.
Caregivers are extremely vital in the overall healthcare system, and as their numbers increase, more resources and services must be available to support their needs and ensure the well-being of those they serve.
Family caregivers need the support of the healthcare system
With the financial challenges of caregiving, costly training is often inaccessible. However, caregiver education is extremely vital in ensuring positive health outcomes. Whether in the form of multi-language courses for the 25% of direct caregivers who are immigrants, or educational content geared toward those who do not have a background in health care, training must equip caregivers with the skills they need to succeed.
Caregiver tasks can range from assisting loved ones with daily activities to more specialized and labor-intensive tasks like caring for specific diseases and health conditions. Training that provides caregivers with protocol for basic infectious control, grocery shopping and meal preparation, and housekeeping activities are fundamental to the job but not always widely offered.
As for the physical and emotional toll of caring for loved ones, free support groups and other resources are available. Many in-person and virtual support programs, informational services, workshops, and additional resources for caregivers are available through national and state-run websites like Eldercare Locator and Caregiver Action Network. Local nonprofits also provide free caregiver support groups for specific health conditions and diseases like Alzheimer’s disease, dementia, or cancer.
The importance of caregiving has been made abundantly clear in the last few years and will only become more vital as more patients rely on home-based care services. Yet caregivers need critical support to help them address the challenges they face to ensure they can provide loved ones with the best care possible.
Vince Baiera, BSN, is a partner for post-acute care at Relias, which serves more than 11,000 healthcare organizations and 4.5 million caregivers. Baiera is a former ICU and travel nurse, published author, and founder and president of step2health.