CHICAGO, October 5, 2017—Over half of caregivers feel undertrained, and 28 percent say they received hardly any or none of the training necessary to provide care to their family members or close friends, according to a new survey from The Associated Press-NORC Center for Public Affairs Research of Americans age 40 and older with long-term care experience. Unpaid family members and friends provide much of the long-term care their loved ones require to remain at home as they age. Many of these older Americans who take on a caregiving role for an aging loved one have limited access to programs designed to provide a break to caregivers, and many face difficulties in the workplace.
In the latest in a series of surveys on long-term care in America, The AP-NORC Center examines the specific experiences of those who provide care and those who receive care. Nearly half of Americans age 40 and older have experience with care, and this survey explores those experiences from the perspectives of both care providers and recipients.
Caregivers provide a wide range of assistance—from housekeeping to health monitoring to medical care—and few have received any formal training to do so. Eighty-seven percent of caregivers learned how to provide long-term care “on the job” or by teaching themselves how to do it. Just 24 percent were trained by a doctor or health care professional.
“Caring for loved ones appears to be both stressful and rewarding at the same time,” said Trevor Tompson, director of The AP-NORC Center. “Nearly all caregivers characterize their experiences as rewarding, yet most also characterize them as stressful. Many say they feel they lacked the training they needed. Additional training might alleviate some of the stress of providing care.”
Providing care also means juggling other responsibilities like work and family. Sixty-four percent of respondents have held jobs while providing care, and 47 percent of those say balancing work and caregiving is difficult. About half of working caregivers say their employer has been supportive of their caregiving role, but 18 percent say they have not felt supported.
Key themes and findings from this study are described below:
- American caregivers provide assistance to older adults suffering from a range of limitations and ailments. Fifty-nine percent provide care to someone with limitations due to a long-term physical condition, 36 percent care for someone who needs help because of loss of memory, and 31 percent care for someone with a short-term physical condition or disease.
- While help shopping for groceries (87 percent) and providing transportation to doctors’ appointments (85 percent) are the most common types of assistance that caregivers provide, many
provide support with medications or health monitoring, such as checking blood pressure. Some also provide forms of clinical medical care such as changing bandages or preparing or administering injections.
- Sixty-one percent of caregivers talked to a health care professional to learn how to provide care, but only 24 percent received formal training from a doctor or other health care professional.
- Virtually all caregivers say the caregiving experience was worthwhile (95 percent) despite more than 3 in 4 characterizing their experience as stressful or time consuming.
- Those caring for someone with a loss of memory or mental abilities are more likely than those caring for someone without these conditions to say caregiving is stressful, time consuming, frustrating, and makes them feel overwhelmed and sad.
- Controlling for other demographic factors, higher education and greater income are associated with describing caregiving in more negative terms. Those with a bachelor’s degree or higher are less likely than those with less education to say caregiving is fulfilling or makes them happy and are more likely to say it makes them feel resentful. Similarly, those with household incomes of at least $50,000 per year are more likely to say caregiving is stressful, frustrating, or makes them feel sad.
- Most caregivers have worked at the same time while providing care, and 47 percent report difficulties balancing work and caregiving responsibilities.
- Women are more likely than men to say their employers are very or extremely supportive of their role as a caregiver (54 percent vs. 40 percent), whereas working male caregivers are more likely to report their employers are not at all supportive.
- Seventy percent of working caregivers have missed work to provide care to an aging friend or family member, and while most use their sick, vacation, or personal time, many have also taken unpaid leave to provide this care.
- Working caregivers whose employers do not offer paid time off (PTO) are more likely than those whose employers do offer PTO to switch from full-time to part-time work to provide care (13 percent vs. 4 percent) and to quit their jobs to provide care (14 percent vs. 6 percent).
- Some working caregivers have experienced serious repercussions at work because they needed to provide care to an aging loved one: 10 percent were treated differently by management or coworkers, 8 percent say they were excluded from further job growth opportunities, and 7 percent had their roles or responsibilities changed. In rare cases, some even report being fired or asked to resign as a result of their caregiving duties.
- Two-thirds of caregivers share caregiving responsibilities with at least one other person—most often with either a sibling or a paid caregiver. But fully one-third take on the caregiving role on their own.
- Seventy-seven percent say there is another family member or friend who can temporarily take on caregiving responsibilities to provide a break, but few have access to formal respite care options for their loved one.
About the Survey
This AP-NORC Center study, with funding from The SCAN Foundation, includes 1,004 interviews with a nationally representative sample of Americans age 40 and older with past or current experience providing or receiving long-term care. The sample includes 79 percent with experience providing care only, 10 percent with experience receiving care only, and 11 percent who have experience with both. Those who have both provided and received care are categorized as receivers in this analysis and report. Data were collected using NORC’s AmeriSpeak® Panel.
About The Associated Press-NORC Center for Public Affairs Research
The AP-NORC Center for Public Affairs Research taps into the power of social science research and the highest-quality journalism to bring key information to people across the nation and throughout the
The Associated Press (AP) is the essential global news network, delivering fast, unbiased news from every corner of the world to all media platforms and formats. Founded in 1846, AP today is the most trusted source of independent news and information. On any given day, more than half the world’s population sees news from AP.
NORC at the University of Chicago is an independent research institution that delivers reliable data and rigorous analysis to guide critical programmatic, business, and policy decisions. Since 1941, NORC has conducted groundbreaking studies, created and applied innovative methods and tools, and advanced principles of scientific integrity and collaboration. Today, government, corporate, and nonprofit clients around the world partner with NORC to transform increasingly complex information into useful knowledge.
The two organizations have established The AP-NORC Center for Public Affairs Research to conduct, analyze, and distribute social science research in the public interest on newsworthy topics, and to use the power of journalism to tell the stories that research reveals.
About The SCAN Foundation
The SCAN Foundation is dedicated to advancing a coordinated and easily navigated system of high-quality services for older adults that preserve dignity and independence.
Contact: For more information, contact Eric Young for NORC at firstname.lastname@example.org or (703) 217-6814 (cell); Ray Boyer for NORC at email@example.com or (312) 330-6433; or Lauren Easton for AP at firstname.lastname@example.org.