2050 and the Caregiver Dilemma

Published in the Woonsocket Call on April 22, 2018

The year 2030 marks an important demographic turning point in U.S. history according to the U.S. Census Bureau’s 2017 National Population Projections, released last month. By 2030, older people are projected to outnumber children. In the next twenty years, when these aging baby boomers enter their 80s, who will provide informal caregiving to them.

Almost three years earlier, in a July 2015 report, “Valuing the Invaluable: 2015 Update Undeniable Progress, but Big Gaps Remain,” the AARP Public Policy Institute warned that fewer family members will be around to assist older people with caregiving needs.

According to AARP’s 25-page report, coauthored by Susan C. Reinhard, Lynn Friss Feinberg, Rita Choula, and Ari Houser, the ratio of potential family caregivers to the growing number of older people has already begun a steep decline. In 2010, there were 7.2 potential family caregivers for every person age 80 and older. By 2030, that ratio will fall sharply to 4 to 1, and is projected to drop further to 3 to 1 in 2050.

Family caregivers assisting relatives or close friends afflicted with chronic, disabling, or serious illness, to carry out daily activities (such as bathing or dressing, preparing meals, administering medications, driving to doctor visits, and paying bills), are key to keeping these individuals in their homes and out of costly nursing facilities. What is the impact on care of aging baby boomers when family caregivers no longer provide assistance in daily activities?

“In 2013, about 40 million family caregivers in the United States provided an estimated 37 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion in 2013, up from an estimated $450 billion in 2009,” notes AARP’s caregiver report. What will be the impact on the nation’s health care system without family caregivers providing informal care?

The Census Bureau’s 2017 National Population Projections, again puts the spot light on the decreasing caregiver ratio over the next decades identified by the AARP Policy Institute, one that must be planned for and addressed by Congress, federal and state policy makers.

Who Will Take Care of Aging Baby Boomers?

With the expansion in the size of the older population, 1 in every 5 United States residents will be retirement age. Who will provide informal caregiving in our nation with a larger adult population and less children to serve as caregivers?

“The aging of baby boomers means that within just a couple decades, older people are projected to outnumber children for the first time in U.S. history,” said Jonathan Vespa, a demographer with the U.S. Census Bureau. “By 2035, there will be 78.0 million people 65 years and older compared to 76.4 million under the age of 18.”

The 2030s are projected to be a transformative decade for the U.S. population, says the 2017 statistical projections – the population is expected to grow at a slower pace, age considerably and become more racially and ethnically diverse. The nation’s median age is expected to grow from age 38 today to age 43 by 2060.

The Census Bureau also observed that that as the population ages, the ratio of older adults to working-age adults, also known as the old-age dependency ratio, is projected to rise. By 2020, there will be about three-and-a-half working-age adults for every retirement-age person. By 2060, that ratio will fall to just two-and-a-half working-age adults for every retirement-age person.

Real Challenges Face Congress as the Nation Ages

Jean Accius, Ph.D., AARP Policy Institute’s Vice President, Independent Living, Long-Term Services and Supports, says, “The recent Census report highlights the sense of urgency to develop innovative solutions that will support our growing older adult population at a time when there will likely be fewer family caregivers available to help. The challenges that face us are real, but they are not insurmountable. In fact, this is an opportunity if we begin now to lay the foundation for a better system of family support for the future. The enactment of the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act, which would create a strategy for supporting family caregivers, is a great path forward.”

Max Richtman, President and CEO of the Washington, DC-based National Committee to Preserve Social Security and Medicare, gives his take on the Census Bureau’s 2017 statistical projections, too.

“Despite how cataclysmic this may sound, the rising number of older people due to the aging of baby boomers is no surprise and has been predicted for many years. This is why the Social Security system was changed in 1983 to prepare for this eventuality. Under current law, full benefits will continue to be paid through 2034 and we are confident that Congress will make the necessary changes, such as raising the wage cap, to ensure that full benefits continue to be made well into the future,” says Richtman.

Richtman calls informal caregiving “a critical part of a care plan” that enhances an older person’s well-being. “While there currently are programs such as the Medicaid Waiver that will pay family members who provide caregiving support more can be done to incentivize caregiving so that loss of personal income and Social Security work credits are not barriers to enlisting the help of younger individuals to provide informal support services,” he says.

Adds Richtman, the Medicare and Medicaid benefits which reimburse for the home-based services and skilled nursing care “will be unduly strained ”as the diagnosed cases of Alzheimer’s disease skyrockets with the growing boomer population. He calls on Congress to “immediately provide adequate research funding to the National Institutes of Health to accelerate finding a cure in order to save these programs and lower the burdens on family caregivers and the healthcare system. “

Finally, AARP Rhode Island State Director Kathleen Connell, says “Our aging population represents challenges on many, many fronts, including healthcare, housing, Social Security, Medicare and, of course, caregiving. It would be nice to think everything would take care of itself if there were more younger people than older people. But that misses the point entirely. The needs of older Americans are a challenge to all Americans, if for no other reason than most of us end up with multiple late in life needs. And too many reach that point without savings to cover those needs.”

“It’s worth noting, by the way, that many of the solutions will come from people 50 and older — many of whom will work longer in their lives to improve the lives of older Americans. We need to stop looking through the lens of ‘old people’ being the problem and instead encourage and empower older Americans to take greater control over their lives as they help others,” says Connell.

“Congress needs to focus on common sense solutions to assure families that Social Security and Medicare are protected. The healthcare industry needs to face the medical challenges. And at the state and local level, we must focus on home and community-based health services,” adds Connell.

For details about the Census Bureau’s 2017 statistical projections, co to http://www.census.gov/newsroom/press-releases/2018/cb18-41-population-projections.html.

For more information about AARP’s July 2015 caregiver report, go to http://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-invaluable-2015-update-new.pdf.

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New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.