Whether assisting an aging parent with the activities of daily living, providing emotional support to a friend undergoing cancer treatment, or helping a family member cope with a major disability, informal or unpaid caregivers play an essential, if often overlooked, role in America’s healthcare system.
Patient support provided by family caregivers often extends beyond direct, hands-on care to include managing finances, shopping, offering companionship, and providing transportation. With 10,000 baby boomers turning 65 every day for the next eight years and the population over the age of 65 expected to increase by 39% by 2040, the need for home-based, informal patient care has never been greater.
A heavy burden for family caregivers
Research shows that for some, providing volunteer care for dependent adults can be a positive experience. Yet evidence also points to the major mental and physical toll caregiving can extract, especially for persons with young families, careers, and other societal obligations. Frequent physical and emotional exhaustion, neglected personal health, lost family and personal time, marital strife, work interruptions, and growing financial difficulties are just some of the contributors to family caregiver stress.
With the population of seniors rising and polls showing that more than three-quarters of adults 50 and older want to age in place, it is vital for stakeholders to ensure that bolstering caregivers becomes a national public health priority. A clearer understanding of the kinds of challenges family caregivers face can lead to solutions that would ease their burden while strengthening the care they provide.
About one in five Americans — 53 million people from all races, ethnic groups and walks of life — have provided care to an adult or child with sickness or disability at some point in the past year. That’s up almost 20% from 43.4 million caregivers in 2015. Nearly 90% are caring for a relative.
Women make up 61% of caregivers, men represent 39%; a little less than a quarter of adults aged 45-to-64 are caregivers, as are 18.8% of adults 65 and older. Family caregiving represents a substantial time commitment and often is the equivalent of a part-time job: about one-in-three caregivers provided 20 or more hours per week of care and over half have provided assistance for two years or longer.
The family caregiver burden of lost time and money
Aside from missing out on time with children or spouses, caregivers — particularly for those in their prime working years — can experience reduced work hours and benefits, foregone career opportunities, and may even be compelled to exit the workforce.
Family caregiver expenses
There are likewise often-substantial expenses associated with caregiving. These can include travel costs, medical expenses, food, and household goods. A 2007 survey found that caregivers spent, on average, $5,531 annually on behalf of the care recipient. Notably, nearly one-third of caregivers who helped a significantly impaired person (someone with dementia and the need for help with at least two personal care activities) reporting having financial difficulties related to caregiving.
Despite the financial burden, tapping alternative care options can be untenable for many. In 2022, the costs-per-day of enrolling in adult day services, hiring a full-time home health aide, or moving the family member to nursing home care were $80, $174 and $306 for a private room, respectively.
The positive and negative health effects of family caregiving
Several large, population-based studies have shown that even with the added time and financial commitments tied to caregiving for aging parents or relatives, about one-third of informal caregivers do not report associated strain or negative health effects. This cadre, in fact, points to positive outcomes: Caregiving makes them feel needed, gives meaning to their lives, enables new skills, strengthens relationships with others, and establishes memories.
But for many others, providing care to aging adult parents is linked to mounting physical and emotional health risks. It is not uncommon for caregivers to be grappling with their own chronic health issues, problems which may be neglected if the focus is on providing care for someone else. According to data from the Centers for Disease Control and Prevention (CDC):
• 40.7% of caregivers have two or more chronic diseases
• 33% have a disability
• 14% report coronary heart disease and/or stroke
• 17.6% report experiencing 14 or more physically unhealthy days in the past month
• 36.7% report getting insufficient sleep
The risks of chronic stress as a family caregiver
Multiple studies likewise have highlighted the grinding stress associated with caregiving. As one research paper notes: “Caregiving has all the features of a chronic stress experience: It creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains, such as work and family relationships, and frequently requires high levels of vigilance.”
The most common signs of caregiving stress include anxiety, depression, worry and loneliness. Chronic stress can contribute to cascading mental and physical problems, including suppressed immuno-response, increased risk for infection, slower wound healing, accelerated cancer growth and chromosomal aging.
The physical and emotional toll on the family caregiver
One study concluded that spousal caregivers who reported caregiving strain were 63% more likely to die within a four-year period than non-caregivers. Another study found that the level of distress reported by many of those caring for someone with cancer was equal to or greater than the distress experienced by the patient.
Similarly, caring for a patient with dementia is more likely to involve factors linked to negative caregiver outcomes. These include the need for greater patient supervision as well higher levels of patient depression and the reduced likelihood the patient can or will express gratitude for the care they receive.
Not surprisingly, older caregivers, individuals of lower socioeconomic status, and those with limited support networks report poorer psychological and physical health than caregivers who are younger and have more economic and interpersonal resources.
Family caregiver stress factors
Other issues consistently linked with greater degrees of depression and stress among caregivers include:
- The care recipient’s behavioral problems
- The care recipient’s cognitive impairment
- The care recipient’s functional disabilities
- The duration and amount of care provided
- The relationship between caregiver and recipient, with a spousal relationship have a greater effect
Caring for the caregivers – resources for family caregivers
Deteriorating mental and physical heath can have a ripple effect that impacts not only the caregivers but also may worsen the health of the care recipient. In both cases, secondary effects, including more costly interventions and, in the case of the caregiver, lost employment opportunities and income, may be the end result. That’s why the issue must be pursued from a public health perspective. To help mitigate the challenges family caregivers face, CDC recommends public health professionals embrace the following priorities:
- Increase messaging that emphasizes both the importance of the caregiver role and necessity for caregivers to maintain their health and well-being.
- Educate the public about the resources and support available to caregivers.
- Educate providers to be mindful of the health risks caregivers face, encourage dissemination of information and tools, and make referrals to supportive programs and services.
- Evaluate caregiver training programs to determine accessibility, effectiveness, and impact.
- Estimate the gap between workforce capacity and anticipated demand to support people with dementia and disability and their caregivers.
- Encourage caregivers to get regular check-ups, use preventive services, and engage in self-care to maintain health.
- Ensure caregivers with disabilities or chronic disease have access to self-management programs to maintain their health.
Legislative action for family caregiver support
New and proposed legislative solutions have emerged to help support family caregivers.
In 2018, the Recognize, Assist, Support and Engage (RAISE) Family Caregivers Act became law under the Trump administration. The legislation requires the Department of Health and Human Services to develop a comprehensive, integrated approach to assisting caregivers, with recommendations that include new support, services and resources. More recently, the Biden administration proposed the American Families plan, which would ensure 12 weeks of paid family leave and medical leave for caregivers.
The provider role in monitoring family caregiver health
Providers may have opportunities to monitor family caregiver health during the care recipient’s regular office visits. For example, one author recommends providing caregivers with brief screening questionnaires that can provide guidance for possible referral to, and intervention by, a behavioral or physical clinician.
“Caregiving strain is often worsened by certain kinds of caregiving demands (dementia and end-of-life care) and in circumstances where caregivers do not have enough resources (knowledge, skills, social support, respite, and community services) and can be overwhelmed,” the American Psychological Association notes.
“Clinicians in many settings are most likely to see these highly strained caregivers, and should be prepared to address their considerable psychological, social, and health needs, while also understanding that caregivers may feel pride, a sense of purpose and other benefits from their caregiving activities.”
Preparing for the coming surge in the aging population
The responsibilities of family caregivers are numerous and often fraught, from balancing the dignity and safety of an aging loved one to helping ensure their financial stability to making the difficult decision that nursing home care is the only viable option. By providing new education, resources and support, providers, public health officials and others can help galvanize a critical but often-forgotten link in the healthcare continuum as the demand burden continues to rise.
As healthy aging and senior healthcare move into the forefront of population health management (PHM), conversations around designing adequate support structures and ensuring sufficient quality mental health services are available for family caregivers will rise in tandem. Reach out to one of the experts at RTI Health Advance to discuss how your organization can best meet these growing needs.