Tag Archives for caregivers

New Report Says Alzheimer’s Disease Is Now Major Public Health Issue

Published in the Woonsocket Call on March 25, 2018

For the second consecutive year, total payments to care for individuals with Alzheimer’s or other dementias will surpass $277 billion, which includes an increase of nearly $20 billion from last year, according to data reported in the Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report recently released last Tuesday.

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system.

“This year’s report illuminates the growing cost and impact of Alzheimer’s on the nation’s health care system, and also points to the growing financial, physical and emotional toll on families facing this disease,” said Keith Fargo, Ph.D., director of scientific programs and outreach for the Alzheimer’s Association, in a statement. “Soaring prevalence, rising mortality rates and lack of an effective treatment all lead to enormous costs to society. Alzheimer’s is a burden that’s only going to get worse. We must continue to attack Alzheimer’s through a multidimensional approach that advances research while also improving support for people with the disease and their caregivers,” he said.

Adds Fargo, “Discoveries in science mean fewer people are dying at an early age from heart disease, cancer and other diseases,” said Fargo. “Similar scientific breakthroughs are needed for Alzheimer’s disease, and will only be achieved by making it a national health care priority and increasing funding for research that can one day lead to early detection, better treatments and ultimately a cure.”

2018 Alzheimer’s Facts and Figures

New findings from the 88-page report on March 20, 2017 reveal the growing burden on 16.3 million caregivers providing 18.4 billion hours of care valued at over $ 232 billion to 5.7 million people with the devastating mental disorder. By 2050, the report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care skyrocketing to more than $1.1 trillion.

Between 2000 and 2015 deaths from health disease nationwide decreased by 11 percent but deaths from Alzheimer’s disease have increased by 123 percent, says the new data in the report, noting that one out of three seniors dies with Alzheimer’s or another dementia. It even kills more than breast cancer and prostate cancer combined. In Rhode Island in 2015, the number of deaths from Alzheimer’s disease was 453, making the devastating brain disorder the 5th leading cause of death in the state.

In 2017, 53,000 Rhode Island caregivers provided an estimated 61 million hours of unpaid physical and emotional care and financial support – a contribution to the nation valued at $768 million dollars. The difficulties associated with providing this level of care are estimated to have resulted in $45 million in additional healthcare costs for Alzheimer’s and other dementia caregivers in 2017.

State Updates Battle Plan Against Alzheimer’s Disease

“The Alzheimer’s Association’s most recent report about Alzheimer’s Disease in Rhode Island illustrates the need to take swift action in updating our State Plan to ensure Rhode Island is prepared to provide the necessary resources to families, caregivers and patients who are struggling with the disease,” says Lt. Governor McKee,

McKee adds that the updated State Plan will be a blueprint for how Rhode Island will continue to address the growing Alzheimer’s crisis. “It will create the infrastructure necessary to build programs and services for the growing number of Rhode Islanders with the disease. The updated Plan will also outline steps the state must take to improve services for people with Alzheimer’s and their families. After the update is complete, my Alzheimer’s Executive Board will seek legislative and regulatory changes to carry out the recommendations of the Plan and ensure that it is more than just a document,” he says.

“One of the many types of caregivers benefiting from AARP’s caregiving advocacy in Rhode Island are family members who care for those with Alzheimer’s,” said AARP Rhode Island State Director Kathleen Connell. “They are among the army of 10 million wives, husbands, sons and daughters nationwide. The majority are women and according to researchers, especially when it comes to dementia and Alzheimer’s care. Approximately 40 percent of those caregivers say they have no other options or choices, and a third say they provide care 24/7.

“The latest report indicates what we already know,” Connell added. “This will continue to be rising challenge in Rhode Island as our population ages. The disease will place more stress on our Medicaid-funded nursing home capacity, which should make this a concern for taxpayers. There is a strong case for increasing research funding so that someday we may reverse the tide.

“Our Web site, http://www.aarp.org, provides abundant resources for these dedicated caregivers. AARP in states across the nation, including Rhode Island, have worked to pass legislation that provides paid respite for caregivers who have jobs as well as caregiving obligations. We have supported the Alzheimer’s Association here in Rhode Island for many years and, last year, a small team of AARP volunteers participated in the Alzheimer’s Walk. Joined by others, they are gearing up for this year’s walk.”

Increased Research Funding Needed Now

Donna McGowan, Alzheimer’s Association, RI Chapter Executive Director, says that the 2018 Alzheimer’s Disease Facts and Figures report should send a very clear message that Alzheimer’s disease is an issue that policy makers cannot ignore. “This is an urgent public health crisis that must be addressed. Early detection and diagnosis of the disease leads to better planning, avoiding preventable hospitalizations, and over all a better quality of life for the patient and the caregiver,” says McGowan.

McGowan warns that the health care system is not ready to handle the increased cost and number of individuals expected to develop Alzheimer’s disease in the coming years. “With a vigorous National Plan in place to address the Alzheimer’s crisis, and annual budget guidance for Congress, it is essential that the federal government continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research,” adds McGowan.

Rhode Island Congressman David Cicilline sees the need for increased funding for direct services for those afflicted with Alzheimer’s disease. He voted for H.R.1625, the omnibus spending bill that increases funding for the National Institute of Health’s Alzheimer’s research by $414 million. And two years ago, Cicilline worked to pass H.R.1559, “The HOPE for Alzheimer’s Act,” which President Obama signed into law to expand Medicare coverage for Alzheimer’s treatment.

If Cicilline succeeds to get the Republican-controlled Congress to have a vote on H.Res.160, his bill to reestablish the House Select Committee on Aging, it will allow House lawmakers to hear expert testimony and make new policy recommendations to improve the delivery of care to those afflicted with Alzheimer’s and to assist caregivers, too.

For details, go to http://www.alz.org/facts.

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