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New Report Finds Lack of Support for Family Caregivers

Those handling the emotionally, physically and financially demanding jobs need help


Part of the Election 2016 Special Report

Family caregivers for adults 65 and older are stressed, isolated and and often suffering financially. With the aging of the boomer population, many more family members and friends will be needed to care for them in America in coming years. And yet fewer of those helpers will exist.

Those are some of the troubling conclusions of the new report, Families Caring for an Aging America, by the National Academies of Sciences, Engineering and Medicine. Released Sept. 13, the 297-page study examines the challenges family caregivers currently face and what will be needed in the future. It also offers a number of public policy recommendations to address these concerning issues.

Aging Boomers and Family Caregivers

Health care and social service systems have not been adequately prepared for the demographic shift that will affect so many older adults and their caregivers, according to the report. And today’s caregivers are often marginalized, left out of treatment decisions and untrained for complicated tasks. Yet, the report says, they are assumed to be available for a broad range of duties.

“Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens,” Richard Schulz, committee chair and Distinguished Service Professor of Psychiatry at the University of Pittsburgh, said in a written statement.

The median amount of time caregivers devote to caring for older adults with “high needs” is five years.

“Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives — from their health and quality of life to their relationships and economic security,” Schulz said. “If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders.”

A few numbers: By 2030, 72.8 million Americans, or more than one in five, will be 65 or older. The greatest growth will be among the “old-old,” who are typically most in need of help. The number in that group, those in their 80s and above, will soar from 27 percent in 2012 to 37 percent in 2050.

The Future of Caregiving

The report’s conclusions are nothing new. Yet the study provides a greater foundation for the nation to plan the necessary steps to confront this inevitable future.

A few of the important takeaways from the report:

  • “Substantial evidence” shows that family caregivers of older adults are more likely to exhibit symptoms of depression and to suffer from anxiety, stress, emotional problems and chronic disease.
  • Those caring for “significantly impaired” older adults are most likely to be economically harmed by their caregiving, “in part because of the many hours of care and supervision and the costs of hiring help.”
  • Caregivers who quit their jobs or cut back on work to care for a relative or friend lose income, collect less Social Security later (since Social Security is based on income during work years) and save less for retirement.
  • The median amount of time caregivers devote to caring for older adults with “high needs” is five years.
  • Not all effects of caregiving are negative. Caregivers said their duties gave them confidence, showed them how to deal with difficulties, brought them closer to the person for whom they were caring and assured them that their loved one was being well cared for.

A Call to Action for the Next President

The authors of the report recommend that the next president’s administration “take steps to address the health, economic and social issues facing family caregivers of older Americans.” They urge the secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies and private-sector groups, to create a National Family Caregiver Strategy recognizing the vital role family caregivers play in the health of older Americans.

The report also calls on leaders to address the needs of the increasingly diverse caregiver population. For instance, research has shown that older African-Americans and Hispanics have been more likely than whites to have functional impairments, the report said. But it has been difficult to get an accurate read on the various sub-groups of caregivers, and more research is needed to get detailed data on them. We also need more longitudinal studies of caregivers and care recipients, the report said.

For their part, presidential candidates Hillary Clinton and Donald Trump have not made caregiving or the aging population a significant issue in their campaigns, although Clinton and the Democratic Party have addressed them far more. Trump has been virtually silent on the matter.

As I explained in a previous Next Avenue article, Clinton said she would work to increase Social Security benefits for people who take time off from paying jobs for family caregiving duties. She also advocates a new tax break for individuals caring for aging parents or grandparents (though not spouses).

In addition, Clinton favors greatly increasing the amount the federal government spends on its Lifespan Respite Care program, which provides money to states to give family caregivers a temporary break. It spent $2 million in 2015, according to CNN. Clinton proposes increasing funding to $10 million a year.

A Confluence of Circumstances

At the same time that more caregivers will be needed in the United States, fewer will be available, the report said. The reasons: Americans are having fewer children. More aging adults have no children. There have been increases in the ranks of the never-married and the divorced. Those who have children may be live farther away from them than did generations past.

What’s more, Medicare and private insurance payers have adopted financial incentives to get patients discharged more quickly from hospitals — often into the hands of caregivers who feel ill-equipped to do what is necessary to keep them healthy. That often includes being in charge of feeding tubes, drainage tubes, catheters and tracheostomies.

“Family caregivers describe learning by trial and error and fearing that they will make a life-threatening mistake,” the report said.

A Risk of Elder Abuse and Neglect

Support for family caregivers and the people they care for must include an acknowledgment of the dark side of caregiving, and to its credit, the report explores the issues of abuse and neglect.

There is no question that many older adults are abused physically, emotionally, and sexually; many are also subject to financial exploitation and neglect. Estimates of victims of abuse have ranged from seven to 10 percent of older adults each year, the report said, though physical abuse (less than 2 percent) and sexual abuse (less than 1 percent) are are a relatively small proportion of the total. Emotional or verbal abuse is by far the most common.

Most of the abuse occurs within families, but it’s unclear whether caregivers are the perpetrators, the report said. However, older adults with dementia, or those who need physical help, experience higher rates of abuse — suggesting that family caregivers are to blame, the report said.

The most common types of abuse include verbal outbursts such as screaming or yelling (22 percent) or using a harsh tone of voice, name-calling or swearing (nearly 12 percent).

More study is needed, the report said, “on how and when a supportive caregiving relationship evolves into an abusive one.”

Methodology

The report was based on the 2011 National Health and Aging Trends Study and the National Study of Caregiving. Both were national studies led by the Johns Hopkins University Bloomberg School of Public Health. The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine.

 

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