Uncompensated Cost of Caregivers is a Whopping $470 Billion

Published in the Woonsocket Call on November 17, 2019

Approximately 41 million unpaid family caregivers provided an estimated 34 billion hours of care in 2017 — worth a whopping $470 billion — to their parents, spouses, partners, and friends, according to the latest report in AARP’s Valuing the Invaluable series. The 2019 estimated value of family caregiving is based on 41 million caregivers providing an average of 16 hours of care per week, at an average value of $13.81 per hour. Previous AARP Public Policy reports were released in 2006, 2008, 2011 and 2015.

“It’s encouraging to see greater recognition of the emotional, physical and financial struggles that caregivers face,” said Susan Reinhard, senior vice president, AARP Public Policy Institute, in an April 14th statement announcing the release of the 32-page report. “But the demands on family caregivers are not just a family issue and we must continue to push for meaningful support and solutions,” says Reinhard.

Every caregiver, as well as their families, know the value of their efforts,” said AARP Rhode Island State Director Kathleen Connell. “In Rhode Island, the estimated total value of 114 million hours of work by the state’s 136,000 caregivers is $1.8 billion. The aggregate is astounding, making a clear case for supporting this vital commitment made by family and loved ones.”

“These numbers inspire our members who spend many hours at the State House as AARP Rhode Island advocacy volunteers,” Connell added. “They have helped pass key legislation — the CARE Act, paid caregiver leaves and many other key bills — that have given caregivers resources and opportunities to make their task less daunting. Caregivers are truly invaluable,” she says.

Putting a Spotlight on the Nation’s Caregivers

AARP’s report notes that the estimated $470 billion equates to about $1,450 for every person in the United States (325 million people in 2017). Its economic impact is more than all out-of-pocket spending on US health care in 2017 ($366 billion). Uncompensated care provided by caregivers is also three times as much as total Medicaid spending on long-term services (LTSS) and supports ($154 billion in 2016) and even the total spending from all sources of paid LTSS, including post-acute care ($366 billion in 2016).

The AARP researchers say that the estimate of $470 billion in economic value of uncompensated care is consistent with nearly two decades of prior research studies, all of which found (like the current study) that the value of unpaid family care vastly exceeds the value of paid home care.

The AARP report, Valuing the Invaluable: 2019 Update Charting a Path Forward, also explores the growing scope and complexity of caregiving, including an aging population, more family caregivers in the paid workforce, and the increasing amount of medical and nursing tasks entering the home.

According to the AARP report, family care givers, who provide day-to-day supports and services and manage complex care tasks, are becoming more diverse. While most family caregivers are women, about 40 percent are men who are providing more assistance than just driving to doctor’s appointments and grocery stores or paying bills. Like all caregivers, they are assisting a parent, spouse or friend with bathing and dressing, pain management, managing medication, changing dressings, helping with incontinence and even preparing special diets.

While a majority of baby boomers are providing caregiving services, a growing number of younger adults are now shouldering this responsibility, too. Nearly 1 in 4 (24 percent) are millennials (born between 1980 and 1996). Despite their low salaries, the young adults are spending more of their salary on caregiving expenses than other generations. The researchers estimated that this spending in 2016 was about 27 percent of their income.

About 60 percent of family caregivers are juggling a job and providing care, too. This will continue as aging baby boomers choose to remain in the labor force to bring additional income into their household. Workplace benefits for caregivers becomes become even more important as they face economic and financial strain in their later years.

For those employees who choose to leave their job to become a full-time caregiver, they risk both short-and long-term financial difficulties, say the researchers.

Finally, the researcher’s recommendations to better support family caregivers included developing a robust and comprehensive national strategy with the needs of an increasingly diverse caregiver population included; providing financial relief and expanding workplace policies; developing caregiver training programs; and expanding state and federal funding for respite programs.

More Work Needs to Be Done

The AARP report warns that the rising demand for caregivers with the graying of the nation’s population, shrinking families will drastically reduce the supply. In 2010, there were 7.1 potential family caregivers for every person age 80 and over. By 2030, there may be only 4.1 potential caregivers for every person age 80 and over, they say.

Although significant federal and state policy are already in place to assist the nation’s caregivers, more work needs to be done, say the researchers. They call on Congress and state lawmakers to keep pace with the changing demographic, social trends and needs of the family caregiver.

Resources and information on family caregiving, including AARP’s Prepare to Care
Guides, are available at http://www.aarp.org/caregiving.

General Assembly: It’s Time to Endorse State Alzheimer’s Plan

Published in the Woonsocket Call on May 12, 2019

Just days ago, the Alzheimer’s Association-Rhode Island Chapter, along with over 75 volunteers and supporters gathered for the group’s Advocacy Day, in the Governor’s statehouse at the Rhode Island State, warning state lawmakers about the increasing incidence in Alzheimer’s disease and its impending impact on state programs and services. According to the Alzheimer’s Association 2019 Alzheimer’s Disease Facts & Figures report, there are now 23,000 people living with Alzheimer’s and 53,000 Alzheimer’s caregivers in Rhode Island. This number will skyrocket as Rhode Island’s population continues to age; they say.

During the two-hour rally, Alzheimer’s advocates pushed for the passage of H 5569, sponsored by Rep. Mia Ackerman (D-Cumberland), and S 310, Sen. Cynthia A. Coyne (D-Barrington), companion measures that would legislatively endorse the newly released State Alzheimer’s Plan.

House Majority Leader Joseph Shekarchi also joined in, calling for passage of H. 5189, his legislative proposal that would create a program under the Department of Health and an advisory council to oversee implementation of programming, requiring training for medical professionals, and establishing Alzheimer’s plans in medical facilities. the Senate companion measure is S 223.

Improving Supports for Those Afflicted with Alzheimer’s

Once the Rhode Island General Assembly passes the legislative proposals to endorses the State Alzheimer’s Plan, the state’s Long-Term Care Coordinating Council’s executive board would seek legislative and regulatory changes to carry out its bold set of recommendations for improving supports to those afflicted by Alzheimer’s and other dementias. But this legislation is stalled.
Twenty-three town meetings,45 expert interviews, combined with a survey of 200 Rhode Islanders impacted by Alzheimer’s, enabled Columbia, Maryland-based Splaine Consulting, a nationally recognized health policy firm, to pull together the content for the State Alzheimer’s Plan. More than 30 recommendations are detailed in this 35-page plan to combat the devastating mental disorder which calls for the implementation of three main recommendations.

The updated State Plan provides Rhode Island with the framework to cooperatively address the full range of issues surrounding Alzheimer’s and other dementias. It will be the blueprint that allows us to take unified, targeted action against the disease, says Lieutenant Governor Daniel McKee McKee, who serves as chair of the state’s Long-Term Care Coordinating Council (LTCCC).

McKee’s LTCCC served as the organizational umbrella for a workgroup, including the Alzheimer’s Association– Rhode Island Chapter, the state’s Division of Elderly Affairs, researchers, advocates, clinicians and caregivers oversaw the development of the newly released State Plan.

“Our updated plan will also position the state, local small businesses and nonprofits to take advantage of federal and other funding opportunities aimed at fighting Alzheimer’s disease,” says McKee.

“Unless we move quickly to address this crisis and find better treatments for those who have it, these costs will grow swiftly in lock step with the numbers of those affected, and Alzheimer’s will increasingly overwhelm our health care system. We must decisively address this epidemic,” says Donna M. McGowan, Executive Director of the Alzheimer’s Association–Rhode Island Chapter, who came to the May 7 news conference on Smith Hill to put Alzheimer’s on the General Assembly’s policy radar screen.

Taking Bold Actions to Confront Alzheimer’s Epidemic

“State government must address the challenges the disease poses and take bold action to confront this crisis now. Alzheimer’s is a growing crisis for our families and the economy. That’s why we are unrelenting advocates for public policy that advances research and improves access to care and support services,” says McGowan.

“Alzheimer’s disease and its impact on society is not only a growing public health concern, it very well may be the next biggest public health emergency that we as policymakers need to address,” said Rep. Ackerman. “We’ve already begun crafting legislation that will establish a program in Rhode Island to address the disease,” she says.

Rep. Ackerman used the Alzheimer’s news conference as a bully pulpit, calling on hospitals, researchers, medical professionals, state agencies, and state law makers to act swiftly to address the looming public health crisis.

“There are many factors to be considered in the great work ahead of us,” Rep. Ackerman said. “From early detection and diagnosis, to building a workforce capable of handling the unique health care needs of Alzheimer’s patients. This is something that will take a lot of effort and a lot of time. Now is the time to get to work on this,” she notes.

Like Rep. Ackerman, Sen. Coyne called for the General Assembly to endorse the State Alzheimer’s Plan and also supported Shekarchi’s legislative proposal, too. She also promoted a bill that she put in the legislative hopper that would allow spouses to live with their partners in Alzheimer’s special care units. Allowing couples to live together would help maintain patients’ relationships, connections and personal dignity, she said.

Rose Amoros Jones, Director of the Division of Elderly Affairs(DEA), noted that the power to the Alzheimer’s Association – Rhode Island Chapter’s Advocacy Day creates connections to people that can influence policy and shine light on the supports and information that families need. “Connection is a core value at DEA – as is choice, she said.

Sharing personal stories, Melody Drnach, a caregiver residing in Jamestown, talked about the challenges of taking care of her father with dementia. From her personal caregiving experiences, she agrees with the updated plans assessment that Rhode Island is dramatically under-resourced to address today’s needs.

Marc Archambault of South Kingstown, who has been diagnosed with the disease, came, too, talking about his efforts to cope with the devastating disorder.

At press time, both Rep. Shekarchi and Rep. Ackerman’s Alzheimer’s proposals have been heard at the committee level and have been held for further study, some call legislative purgatory.

Alzheimer’s Impacts Almost Everyone

The devastating impact of Alzheimer’s may well touch everyone in Rhode Island, the nation’s smallest state. Everyone knows someone who either has Alzheimer’s or dementia or is a care giver to these individuals. It’s time for the Rhode Island General Assembly to endorse the State’s Alzheimer’s Plan especially with no fiscal cost. We need a battle plan now more than ever to effectively deploy the state’s resources to provide better programs and services to those in need and to support caregivers.

Call your state representatives and Senators and urge that H 5569 and S 310 are passed and sent to Governor Gina Raimondo to be signed. For contact information, call Eric Creamer, Director of Public Policy and Media Relations, Alzheimer’s Association – Rhode Island Chapter, (401) 859-2334. Or email ercreamer@alz.org.

Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…