Tag Archives for AARP Rhode Island

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.

Older Americans Impacting the Economy

Published in Woonsocket Call on September 25, 2016

Sometime in your life you might have heard this comment — older people are a drain on the economy. A newly released AARP report shatters this myth once and for all by detailing a rise in spending and workforce contributions of aging baby boomers.

AARP’s 28 page report, The Longevity Economy: How People Over 50 Are Driving Economic and Social Value in the US, takes a hard look at how our nation’s population of 111 million 50-plus consumers impacts the economy.

According to this report, released on September 20, the 50-plus age groups generates a whopping $7.6 trillion in economic activity (a $500 billion increase from 2013), including $5 trillion in consumer spending by people 50-plus. The researchers say the increases reflects the nation’s shifting demographic and spending patterns of this group due to longer life spans and prolonged employment.

Older Adults a Powerful Economic Force

The 50-plus cohort represents a powerful force that drives economic activity and the growth of this age group and has a transformative impact on the nation’s products and services.

According to the report, produced by Oxford Economics for AARP, members of the Longevity Economy are employed longer and making contributions within the workforce. In addition, the economic activity that comprises the Longevity Economy generates $1.8 trillion in federal, state and local taxes. As older people extend their work lives, they are fueling economic growth past the traditional retirement age of 65 as well as combating myths about how aging affects the economy.

“As the 50-plus demographic continues to grow, the market opportunities are too large to ignore,” said Jody Holtzman, senior vice president of market innovation, AARP. “With those in the ‘longevity economy’ wanting to maintain independence, employment and health for as long as possible, opportunities abound for companies to develop products and services to meet the demand. This report offers a strong roadmap for companies to address the needs of the 50-plus population.”

Look for the nation’s Longevity Economy to be more ethnically diverse. The report notes that by 2050, Black, Hispanic, Asian, and other non-white groups will make up 45 percent of the 50-plus population, compared with 26 percent in 2015. Demographic changes will influence the types of goods and services that the 50-plus population consumes and invests in, say the researchers.

Aging baby boomers and seniors will be a “contributing force” in the workplace and heavily into entrepreneurship. The report’s findings indicated that people age 50-plus are working longer, earning wages, spending more money, generating tax revenue, and producing economic value for an extended period of time. Those aged 55-64 have had the highest rate of entrepreneurial activity in the nation and over the last 10 years and one in three US businesses in that timeframe was started by an entrepreneur aged 50 or older.

The report’s findings pierces the long-held stereotypes that as one ages they become less productive, not as quick and agile when compared to younger employees. Researchers say while these observations may be true in some occupations, however, the report’s data suggests that in many instances productivity may increase in your later years. This may occur because older workers who are more highly educated are employed in more knowledge-based professions and less physically active ones.

Researchers observed that the Longevity Economy supported job sustainability. The AARP report found that in 2015 alone, nationwide spending by people aged 50 supported more than 89.4 million jobs and more than $4.7 trillion in the nation’s labor income — 61 percent of all U.S. jobs and 43 percent of labor income was related to this groups’ spending, impacting health services and education.

Meanwhile, the AARP report notes that The 50-plus population has a strong desire to stay independent and active while they age, resulting in businesses developing new technologies – such as remote monitoring, smartphone apps and ambient computing – that cater to them.

Finally, the AARP report found that baby boomers are not stingy. They donate at a larger rate than younger generations, with 80 percent of those 65-plus giving to charity in 2015. When not working boomers spend a lot of their time volunteering, too – individuals 55-64 spend 128 hours per year while those 65-plus spend 133 hours per year. In addition, 83 percent of the nation’s household wealth is held by those over 50 years old, say researchers.

In the Ocean State…

“In Rhode Island, we know that the 50+ population is an economic driver,” said AARP Rhode Island State Director Kathleen Connell. “On the younger end, the demographic represents key leaders in business, education and government. Sometimes it seems as if the ‘young innovators’ get all the press, but this core of established, successful and still quite energetic Rhode Islanders is undeniable. At the other end of the spectrum, $2.9 billion dollars in Social Security benefits are paid out to Rhode Islanders and a large portion of that spending is here in the state. Total economic output is estimated at $4.98 billion. People also would be surprised to know that Rhode Islanders 65 and older comprise 18 percent of the workforce.

“They are caregivers and philanthropists as well,” Connell added. “And their volunteer service is valued at $148 million a year. However, this is not to deny that many older people have real and pressing needs. That will grow as a percentage of the state’s population and we need to plan for those realities.

“Younger entrepreneurs are important to the state’s future,” Connell concluded. “But the brightest, in my opinion, recognize the 50+ population as both a market and a resource. Many are tapping the generation that came before them as an advantage as they grow their own successes. We want to see more of that. It’s a win-win we can’t pass up.”

It is no surprise to economist Ed Mazze that consumers age 50-plus are the most important demographic group for businesses to target. He says there are over 120 million people in this group (the baby boomers (born 1946 to 1964) and the Silent Generation (born from 1925 through 1945).

Mazze, Distinguished Professor of Business Administration at the University of Rhode Island, notes that boomers are willing to spend on technology, use social media, purchase online and represent a good market for many luxury products. “Many new products have been created for the Silent Generation in areas of food and pharmaceuticals and other products have been redesigned and reengineered such as appliances, automobiles and furniture for ease of operation,” he says.

“There are many in both markets still willing to pay full price for the products and services they buy if they feel they are getting full value for these purchases. These are two important consumer market segments that should not be neglected,” adds Mazze.

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