Who's Caring for the Caregivers as Complex Medical Needs Move Home?

A chronic health situation may worsen or, more likely, a crisis may happen suddenly with a call in the middle of the night. Millions of Americans then find themselves as a caregiver to a loved one, and as people live longer, as well as farther away from their families, healthcare providers, healthcare systems, policy makers, and employers need to change how they recognize and respond to the growing numbers of caregivers taking care of older adults, experts in the field said.

By 2030, 72.8 million US residents, or more than 1 in 5, will be 65 years or older.¹ And the proportion of the elderly in their 80s, 90s, and beyond is projected to rise from 27% in 2012 to 37% in 2050. Yet, with a lower birth rate, more people remaining child free, or families changing by divorce, there will be fewer family caregivers to rely on.

Nearly 40 million people, or 16.6% of the population, are caring for an adult, according to a 2015 report from the AARP Policy Institute and the National Alliance for Caregiving.²

The nature of the unpaid caregiving “job” itself has changed as well. With shorter hospital stays, caregivers find themselves suddenly learning how to give injections, change feeding tubes and catheters, take care of wounds, and other tasks that used to be performed by licensed healthcare workers. Family members find themselves thrust into a role for which they are not prepared.

Families have always taken care of their elders, said Richard Schulz, PhD, the director of the University of Pittsburgh’s newly created Center for Caregiving Research, Education and Policy at The University of Pittsburgh Health Policy Institute, in an interview with The American Journal of Managed Care^® (AJMC^®). But over the past 2 to 3 decades, an entirely different level of work is being placed on caregivers, Schulz and others say.

“Caregiving is now more intense and taking place over a longer period of time because of increased longevity,” he said. “What we‘re seeing is our caregivers being asked to take on fairly complex medical procedures.”

Schulz is a distinguished service professor at the Pitt School of Medicine and chaired the 2017 National Academy of Sciences Study of Family Caregiving for Older Adults. The report recommended the development of a national strategy to support family caregivers.

He said the new, multidisciplinary caregiving research center brings together resources that were previously scattered in different departments across the university, in “recognition that we have the critical mass and expertise” to bring resources to this issue. Researchers will focus on the impact of caregiving on both those giving and receiving care, the development of strategies to enhance the positive effects of caregiving, and the formulation of policies to support caregivers.

Caregiving can bring an immense amount of stress—physical, mental, emotional, and even financial, as many caregivers are middle-aged adults in their prime working years, who, after possibly getting over the hump of childcare or schooling expenses for children, are suddenly faced with taking time off from work for caregiving duties, or even leaving their jobs altogether.

How one feels about caregiving usually hinges on whether or not they feel like they had a say in their current situation, said C. Grace Whiting, JD, president and chief executive office of the National Alliance for Caregiving, a nonprofit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy.

“If you feel like you had no choice, which is half of all caregivers, whether it’s positive or negative you are more likely to experience stress or strain,” she said in an interview with AJMC^®.

The Alliance and the AARP Public Policy Institute released a 2015 report on caregiving that found that on average, caregivers spend 24.4 hours a week caring for their loved one. Twenty-three percent said they were spending 41 or more hours per week caregiving.

Schulz said 15 to 20 caregiving hours a week was about the point at which people will start to report feeling significantly more stress.

Rx4Good, a healthcare consulting firm focused on patient engagement and advocacy, recently released results of an online survey it conducted for the Alliance. Respondents were recruited from patient organizations, so they were more active and engaged than typical respondents, said Whiting.

The survey found:

• 91% of caregivers were very involved in treatment decisions or medical choices, and that role had increased over the past year.
• 55% of caregivers had to remind healthcare professionals of the other health conditions affecting the patient, and caregivers attended healthcare provider visits an average of 17 times in the past year.
• 69% said they were thrown into their caregiving position based on an emergency or new diagnosis.

As confidence in learning more about and managing the health condition grew, respondents felt more confident in their ability to communicate with providers, the survey found.

“This is an opportunity for physicians to invite people in for shared decision making,” said Whiting. “Formal recognition is extremely important,” she said, even if providers just say, “thank you for what you are doing.”

Schulz said healthcare systems need to assess caregivers, instead of just assuming that someone is home to provide care for someone who is vulnerable. This is to protect not only the person receiving care but also the caregiver, asking, “how good a job will you do for the patient and how well will you cope?”

“Low health literacy and socioeconomic status are risk factors for caregiver outcomes,” he said.

Reimbursement also needs to change to allow physicians to receive payment for the additional time it may take to communicate with a caregiver, both Whiting and Schulz said.

At a minimum, states could pass the Caregiver Advise, Record, Enable (CARE) Act, a state-level initiative created by the AARP, both said. Enacted in nearly 40 states so far, the law requires that hospitals must:

• Record the name of the family caregiver on the medical record
• Inform the caregivers when the patient will be discharged
• Provide the caregiver with education and instruction of the medical tasks he or she will need to perform for the patient at home.

“The fact that you have to pass a law to do that is a signal of the disconnect between the formal and informal system of care,” Schulz said.

References

1. National Academies of Sciences, Engineering, and Medicine. 2016. Families caring for an aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
2. National Alliance for Caregiving and AARP Public Policy Institute. Caregiving in America. caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Final-Report-June-4_WEB.pdf. Published June 2015. Accessed July 9, 2018.