Tag Archives for caregivers

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.

New Approach to Support Caregivers Needed

Published in Woonsocket Call on September 18, 2016

Currently 18 million people across the nation provide assistance with activities of daily living, transportation, finances, wound care and giving injections to their aging parents, spouses, family and friends. AARP Rhode Island estimates that 148,000 Rhode Islanders are caregivers. The future is bleak for those requiring caregiving assistance in the near future. According to a recently leased report by The National Academies of Sciences, Engineering, and Medicine (NASEM), the need for family caregivers will drastically increase but demographic shifts reduce the potential pool of caregivers to tap.

Being a Caregiver in America

The 340 page NASEM report (taking 20 months to produce) calls for the retooling of the nation’s health and long-term care delivery system through team based care (using a person and family care model approach) and policy changes to better support family caregivers in the delivery of care to older Americans.

The recommendations detailed in Families Caring for an Aging America, released on September 13, 2016, challenges policy makers “to transform the health care experience for older adults and their family caregivers,” says Nancy Morrow-Howell, PhD, president of the Washington, D.C.-based The Gerontological (GSA) Society of America, the nation’s largest interdisciplinary organization devoted to the field of aging. “The approach requires a multidimensional, interdisciplinary effort that spans diverse settings of care. GSA strongly supports this effort to create a person- and family-centered model for team-based care that recognizes and rewards the role of the family caregiver,” she notes.

Adds Richard Schulz, who chaired NASEM’s Committee on Family Caregiving for Older Adults (consisting of 19 caregiving experts) that oversaw this study and who serves as Distinguished Service Professor of Psychiatry, University of Pittsburgh, “Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens.”

Schultz adds, “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. If the needs of the caregivers are not addressed, we as a society are compromising the well-being of elders. Supporting family caregivers should be an integral part of the nation’s collective responsibility for caring for its older adult population.”

According to a release, NASEM’s highly anticipated report noted that by 2030, 72.8 million U.S. residents – more than 1 in 5 – will age 65 or older. According to the National Survey of Caregivers, in 2011, 17.7 million people – or approximately 7.7 percent of the total U.S. population aged 20 and older – were caregivers of an older adult because of health problems or functional impairments. This estimate does not include caregivers of nursing home residents.

Furthermore, being a caregiver is not a short-term obligation, says the report, noting that the median number of years of family care for older adults with high needs is around five years. The proportion of older adults who are most likely to need intensive support from caregivers – those in their 80s and beyond – is projected to climb from 27 percent in 2012 to 37 percent by 2050.

A Shrinking Pool of Caregivers

The NASEM’s Family Caregiving Committee says that little policy action has been taken to prepare the nation’s health care and social service delivery systems for this demographic shift. While the need for caregiving is rapidly increasing, the number of the potential family caregivers is shrinking. Current demographic trends – including lower fertility, higher rates of childlessness, and increases in divorced and never-married statuses – will decrease the pool of potential caregivers in the near future. Unlike past years, aging baby boomers and seniors will have fewer family members to rely on for their care because they will more likely be unmarried or divorced and living alone, and may be even geographically separated from their children.

The in-depth report found that family caregivers typically provide health and medical care at home, navigate a very complicated and fragmented health care and long-term services and support systems, and serve as surrogate decision makers. Although these individuals play a key role caring for older adults with disabilities and complex health needs, they are oftentimes marginalized or ignored by health care providers. Caregivers may be excluded from treatment decisions and care planning by providers who assume that they will provide a wide range of tasks called for in the older adult’s care plan.

Confirming other research studies, the committee found that caregivers have higher rates of depressive symptoms, anxiety, stress, social isolation, and emotional difficulties. Evidence also suggests that they experience lower physical well-being, elevated levels of stress hormones, higher rates of chronic disease, and impaired preventive health behaviors.

Those taking care of very impaired older adults are at the greatest risk of economic harm, because of the many hours of care and supervision they provide. However, caregiving can provide valuable lessons, helping the caregiver deal with difficult problems and bringing them closer to the recipient of care.

Next Steps

NASEM’s report calls for the next presidential administration to take immediate action to confront the health, economic, and social issues facing family caregivers. Also, the committee urges the secretary of the U.S. Department of Health and Human Services, in collaboration with other federal agencies, and private-sector organizations, to develop and implement a National Family Caregiver Strategy that recognizes the essential role family caregivers play in the well-being of older adults.

The report recommends that the nation’s health and long-term care systems must support caregiver’s health, values, and social and economic well-being, as well as address the needs of the of a growing caregiver population that is both culturally and ethnically diverse.

Federal programs (such as Medicare, Medicaid and Veterans Affairs) must also develop, test and implement effective mechanisms to ensure that family caregivers are routinely identified, assessed, and supported. Payment reforms can motivate providers to engage caregivers in the delivery of health care, too.

AARP Rhode Island State Director Kathleen Connell agrees with the NASEM’s report’s assessment that the importance of a caregiver’s role in an aging society cannot be overstated. At her organization she clearly sees an increased demand for caregivers and knows all-to-well the impact of a shrinking pool of potential caregivers on those in need.

“It is essential that we take action now to do all we can to remove obstacles and additional financial strain and mitigate physical and mental stress where possible for caregivers,” says Connell. AARP has compiled a wealth of research and information on aging issues that can be accessed on http://www.AARP.org.

Final Thoughts…

On Jan. 1, 2016, a new Rhode Island law took effect that would help Rhode Islanders avoid costly and time-consuming red tape when exercising health care, financial and other legal responsibilities for their out-of-state, elderly loved ones.

Why reinvent the wheel? Rhode Island law makers, the state’s Division on Elderly Affairs and the Lt. Governor’s Long-Term Care Coordinating Council can do more to support the state’s growing caregiver population. With the next session of the Rhode Island General Assembly starting in January 2017, state officials and lawmakers can reach out to other states to learn what state-of-the art caregiver programs can be implemented here.

For a copy of the report go to: nationalacademies.org/caregiving

Calling on Congress to Increase Alzheimer’s Funding

Published in Woonsocket Call on February 21, 2016

Three weeks before President Obama released his Fiscal Year 2017 Budget on February 9,  Senators Susan Collins (R-ME), who chairs the U.S. Select Committee on Aging, and Amy Klobuchar (D-MN) along with seven of their colleagues, called on the Democratic President to increase funding for Alzheimer’s research as part of his last proposed budget request. Senator Sheldon Whitehouse (D-RI), who sits on the Senate Aging Panel, was among the cosigners.

In the bipartisan January 28 correspondence,  the cosigners said, “If nothing is done to change the trajectory of Alzheimer’s, the number of Americans afflicted with the disease is expected to more than triple between 2015 and 2050,” the Senators wrote.  Already our nation’s costliest disease, Alzheimer’s is projected to cost our country more than $1 trillion by 2050… Surely, we can do more for Alzheimer’s given the tremendous human and economic price of this devastating disease.”

Furthermore, cosigners warned that “$2 billion per year in federal funding is needed to meet the goal of preventing or effectively treating Alzheimer’s by 2025.” 

 Aging Groups Express Disappointment

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare (NCPSSM), says that the Consolidated Appropriations Act, 2016, (P.L.114-113) provided $936 million in FY 2016 (a $350 million or 59.7% increase over FY 2015) for Alzheimer’s disease research at the National Institute on Aging (NIA), the nation’s leading funder of Alzheimer’s disease research.

Richtman expressed disappointment that Obama’s budget proposal did not recommend funding about the FY 2016 level for Alzheimer’s disease and dementia research, it was essentially flat funded.

“Scientists have estimated that spending at least $2 billion a year on research is necessary to accomplish the national Alzheimer’s plan goal of preventing or effectively treating Alzheimer’s disease by 2025,” says Richtman.

According to NCPSSM’s 2016 Legislative Report, “the number of people suffering from Alzheimer’s disease or a related dementia is expected to skyrocket over the next few decades because many people are living longer and the incidence of Alzheimer’s disease increases with age.”

Richtman says “making a significant investment in funding towards finding a cure and appropriate treatments for persons with Alzheimer’s disease and dementias is key to reducing the massive financial drain this disease will impose on the future of the Medicare program, along with the devastating emotional and financial toll exacted on the millions of Alzheimer’s victims and their family members and caregivers.”

The Alzheimer’s Foundation of America (AFA) also expressed disappointment in the proposed $337 million cut in research funding at NIA, contained in Obama’s 2017 Fiscal year budget proposal. “The Administration has been a champion in the fight against Alzheimer’s disease; however, we are disappointed that, in his final budget, the President is retreating,” said CEO and President Charles J. Fuschillo, Jr., of the Alzheimer’s Foundation of America (AFA). “We were hoping President Obama would take the dramatic step necessary to confront the dementia crisis in this country head-on. We will continue to work with Congressional appropriators to ensure we are on the path to a cure,” says Fuschillo, Jr.

Like NCPSSM, Cicilline, Reed, Whitehouse, and many members of congress, the New York-based AFA urged the Administration to build on the historic 60 percent increase in Alzheimer’s research funding that was included in this year’s budget that provided an additional $1 billion in research funding in the upcoming federal budget.  If done, total federal spending would reach almost $ 2 billion, an amount that Alzheimer’s experts say is necessary to finding a cure or meaningful treatment by 2025 (detailed in the National Plan to Address Alzheimer’s Disease.

According to AFA, currently Alzheimer’s disease is the sixth leading cause of death in the United States, with studies indicating it could actually be as high as the third-leading caused.  But this devastating disorder is the only disease in the top 10 for which there is neither a cure nor impactful treatment.  Furthermore, “even with the Fiscal Year 2016 funding increase, funding for Alzheimer’s lags far behind HIV/AIDS, cancer and heart disease.

On the Home Front

Congressman David N. Cicilline, who successfully led the effort in the House to increase funding for Alzheimer’s research by more than 50% last year, sees a need for increased funding a necessity in the Fiscal Year 2017. “Alzheimer’s disease afflicts 22,000 Rhode Islanders and their families each year,” the Democratic congressman representing Congressional District 1.

With Congress poised to begin hammering out next year’s federal budget, Cicilline plans to continue his efforts in the House to fight for an increase federal funding for a treatment and a cure of the devastating disorder.  He urges for Alzheimer’s disease research remain a major funding priority for policymakers at every level of government.

Senator Jack Reed, serving as a member of the Labor-HHS Appropriations Subcommittee, says, “Last year, we successfully included a $350 million boost in new spending for Alzheimer’s research, a 60% increase over the previous year.  Looking ahead to the coming fiscal year, we still have our work cut out for us in this challenging budgetary climate, but I am pushing to secure additional resources to help prevent, treat, and cure Alzheimer’s, as well as for education and outreach.”

“More and more Americans are being impacted by Alzheimer’s disease and we need a serious national commitment to finding cures and treatments.  That means making strategic investments now that will help save lives and future dollars in the long-term,” notes the Senator.

A Call for Action

Experts tell us an impending Alzheimer’s disease epidemic is now upon us. Federal and state officials are scrambling to gear up for battle, developing national and state plans detailing goals to prevent or treat the devastating disease by 2025.

According to the Rhode Island Chapter of the Alzheimer’s Association, an estimated five million Americans over age 65 are afflicted with Alzheimer’s disease in 2013.  The prevalence may well triple, to over 16 million, if research does not identify ways to prevent or treat the cognitive disorder, says the Rhode Island nonprofit.  By 2050, it’s noted that the estimated total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Congress must not act “penny wise and pound foolish” when it ultimately comes to determining the amount of federal dollars that will be poured into Alzheimer’s research in next year’s fiscal budget.  Less dollars or level funding will only increase state and federal government’s cost of care for Alzheimer’s care in every municipality in the nation.  A total of 469 seats in the Congress (34 Senate seats and all 435 House seats) are up for grabs in the upcoming presidential election in November.  Lawmakers must remember that every voter may be personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.  That ultimately becomes a very powerful message to Capitol Hill that it is important to increase the funding to NIA to find the cure.