Tag Archives for caregiving

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

Rhode Island General Assembly Seeks to Assist State’s Caregivers

Published in Woonsocket Call on June 14, 2015

With the graying of America’s population, the profile of the typical family caregiver has changed, says a new report released by the National Alliance for Caregiving and AARP. The findings trouble aging advocates who warn that as care givers age they require more long term care support and community based care services.

Taking a Look at Today’s Caregiver

The report, “Caregiving in the United States 2015,” tells us that the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as America’s population.

According to the 81 page report, today’s family caregiver also provides unpaid care for at least 21 hours a week, and has been care giving for an average of 5-1/2 years.  These individuals expect to continue providing care to their loved ones for another 5 years. Nearly half of these higher-hour caregivers report high emotional stress (46 percent), too.

Men, often stereotyped as failing to take on caregiving responsibilities, currently represent a whopping 40 percent of family caregivers, also providing an average of 23 hours a week being a caregiver to their loved ones, adds the report.

The study’s data indicates that today nearly a quarter of the nation’s caregivers are millennials between the ages of 18 and 34 and they are equally likely to be male or female. On the other end of the spectrum, 75 and older caregivers are typically the sole support for their loved one, providing care without paid help or assistance from relatives and friends.

Meanwhile, caregivers, with an average household income of $45,700, tell the researchers that they are not only emotionally strained, but financial strained as well. These higher-hour older caregivers report difficulty in finding affordable care giving services, such as delivered meals, transportation, or in-home health services, in their community, for themselves and their loved ones.

The report also notes that “Caregivers of a close relative—like a spouse or a parent—who are likely to provide care for 21 hours or more, indicate that being noted as a family caregiver in the medical records of the care recipient would be helpful in managing their caregiving responsibilities.”

Finally, the study’s findings indicate that caregivers who live more than an hour away from their care recipient also report higher levels of financial strain (21 percent), perhaps because 4 out of 10 long-distance caregivers report the use of paid help (41 percent).

Report Calls for Supporting Caregiver Needs

As previous AARP research has shown, we’re facing a caregiving cliff,” said Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute; and chief strategist, Center to Champion Nursing in America. “By mid-century, there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

We’re especially concerned that not enough is being done to support family caregivers in the public or private sector as they age,” says Gail Gibson Hunt, president and CEO of the National Alliance for Caregiving. “There’s a double-edged sword when we fail to support caregivers, because we put both the caregiver and the care recipient at risk,” she warns.

Hunt observes, “Rhode Island is a unique state in that it has the highest percentage of persons over age 85. The data in this report speaks to some of the challenges of a graying population, particularly the needs of caregivers who are 75 or older.”

“We know from the data that the ‘typical’ caregiver over 75 is caring for a spouse or close relative, and spends about 34 hours a week providing care. This can be extremely challenging for an older person who may be managing their own mobility and health issues, as they help a loved one with basic needs like bathing or everyday tasks like grocery shopping,” said Hunt.

Hunt says, “Rhode Island has an opportunity to continue supporting older people and their caregivers, who are also growing older and need care.”

Lawmakers Posed to Pass Caregiver Law

           In June 4th, the Senate passed SB 481 A, the CARE (Caregiver Advise, Record  and Enable) Act, to provide caregivers with timely information to allow them to provide post-discharge care.  The House Chamber passed its measure, HB 6150 Sub A on June 10th.  Both chambers must now approve the legislation from the opposite chamber.  If passed, they go to the Governor for approval.  This legislation will be invaluable to the state’s 148,000 caregivers who provided 142 million hours of care for loved ones.

“We are delighted that – upon the CARE Act becoming law – Rhode Island will join seven other states that  have enacted CARE Act legislation, with bills in three other states awaiting their respective Governor’s signatures,” said AARP State Director Kathleen Connell.

“Together, AARP worked with a strong coalition of stakeholders, as well as the House and Senate sponsors, Representative Eileen Naughton, and Senator Gayle Goldin, and the members of the House’s Health, Education and Welfare Committee and the Senate’s Health and Human Services Committee,“ notes Connell.

“The passage of the CARE Act dovetails with the release of “Caregiving in the United States 2015,” which  presents a portrait of unpaid family caregivers today. It specifically addresses vulnerable groups of caregivers who face complex, high burden care situations. They tend to be older caregivers, who had no other option but to take on caregiving duties.” adds Connell.

Connell says, “It is sobering to conclude that in Rhode Island, with its above-average older population, we risk seeing more and more of old sick people caring for older sicker people. Clearly, that’s not a good thing and it needs addressing sooner than later.”

“One thing we noticed as the CARE Act made its way through the General Assembly was that a number of lawmakers shared their own personal caregiving stories. Some issues are harder to personally identify with than others, but when it comes to caregiving, it’s good to know we have this kind of attention. The report adds data and statistics that should help frame solutions,” says Connell.

 

Director Charles Fogarty, who oversees the state’s Division of Elderly Affairs (DEA), sees the value of AARP’s report highlighting the “critical role” of caregivers taking care of their loved one.  “Family support is essential to allow seniors to stay in their own homes and live as independently as possible, he says, noting that federal funds allows DEA to administer respite and care giver support programs.

“As the baby boomer generation ages, DEA will continue to seek out resources that provide support to family members who care for their loved one,” says Fogarty.

The CARE Act can provide assistance to those tirelessly care for their aged or disabled loved ones.   Kudos for the Rhode Island General Assembly giving them the tools to do a better job.

Herb Weiss, LRI ’12 is a Pawtucket-based writer covering aging, health care and medical issues.  He can be reached at hweissri@aol.com.

 

Tale of Two Caregivers

Published October 5, 2012, Pawtucket Times

           Being a caregiver to an older parent while raising children has now become the new rite of passage for aging baby boomers who, by the millions, are moving into their middle age years and beyond. Often called the sandwich generation for having care responsibilities at both ends of the age spectrum, these individuals become emotionally challenged, physically drained in their attempts to cope and juggle a multitude of tasks.

             According to National Alliance for Caregiving and AARP, more than 65 million persons, 29% of the nation’s population, provide care for a chronically ill, disabled, older family member or relative during any given year. The caregiver spends an average of 20 hours per week providing care for their loved ones.

 Taking on New Care giving Responsibilities

           Over seven years ago, Catherine Taylor, 51, the State’s Director of the Department of Elderly Affairs, and her husband, Rob, a practicing attorney, found themselves thrust into this new very demanding role with huge responsibilities. Like many others, the couple took on the demanding role of being caregivers of an elderly parent while juggling the intense domestic demands of taking care of four children, whose ages ranged from 3 years old to age 15.

           The Providence couple was now sharing the care of a very independent 83-year-old widow, who at that time resided in her home in Connecticut, one that she had designed. The older woman still continued to practice as an architect until her health began to rapidly steep decline.    

          In 1995, “We moved her back to Rhode Island six months before she died when she became too infirm to live independently in her home,” remembered Catherine.  

        Catherine wanted her mother-in-law to move in with her family, “but she was just too independent for that,” she said.  Her husband’s mother would ultimately choose to live out her final days in an apartment at a senior living facility on Providence’s Eastside, near the Taylor’s home. 

         As is the case with many caregivers who relocated their loved ones to live close by, packing, scheduling the move, and getting the Connecticut house ready for sale became the first chore of being a caregiver, notes Catherine.   

         According to Catherine, becoming a caregiver while working and raising a large family was incredibly hectic. “Many times we had to be in two or three places at one time,” each day.  Catherine adjusted her work schedule to help her mother-in-law with activities of daily living such as dressing, assisting in going to the bathroom, and feeding, take her to the emergency room or stay with her in the hospital, while wanting to be at home cooking her family dinner, and helping her children do their homework.

 Tips on Coping for Caregivers

            The couple juggled their roles as parents, caregivers and employees as best they could.  For instance, “our oldest child would be charged with watching his younger siblings”, Catherine says.  When visiting her mother-in-law to cook and assist her with eating, Catherine brought the youngest along to the senior living facility, and placed him in a portable playpen next to the kitchen table. Catherine, her husband and his sister, would divvy up cooking chores, each one take responsibility for making either breakfast, lunch or dinner.

           Supplemental care, provided by a home health aide, was especially needed when the aging baby boomer couple had to be at work.   

          While taxing for the entire family, care giving did have a positive impact on Catherine’s children.  “It really impressed on them how our family pulled together,” she said, noting “that it made them feel useful because they had specific jobs to perform to keep the family running.”    

           When asked if she got enough respite care for herself, Catherine quipped, “I never get enough!”  She added, “For us being part of a large nuclear family, also having a large extended family, we were able to trade off with each other.  But a lot of people don’t have that option,” she notes.  One of the hardest things about being a primary caregiver is how alone you can feel, Catherine said. “You’re living a different life from most other people.  You watch other families make snap decisions to go to the movies, and just hop in their car and go.  For you to do the same thing, the logistics tend to be like the invasion of Normandy.  You just have to go through so much organizing to have simple pleasures that other people don’t think twice about”.

          “Most family caregivers look like they are doing fine and think they are doing fine, but family, friends and neighbors, and sometimes community agencies, need to check in and give them a break so they care recharge their batteries.”

          Catherine suggests that caregivers maintain their relationships with friends and colleagues as hard as that is to do so they will look in on you, stop by for coffee, bring you dinner and help recharge you.  “This will allow you to keep doing your care giving job with love.”

 Double Duty as a Caregiver

          Sixty-four-year-old, Kathy Heren, Rhode Island’s Long-Term Care Ombudsman, a licensed practical nurse and caregiver, and her husband, John, 63, a chef, slipped into the care giving in the mid-1990s, watching out for two elder family members at the same time, a 72-year- old mother and her 78-year-old uncle.

          Both frail relatives (one had dementia and the other a heart condition) lived independently in their homes located in East Providence and on the Eastside. “Being Irish, they were both very stubborn in accepting assistance,” the aging advocate remembered. While professionally helping others cope with care giving and long-term care issues, Rhode Island’s Ombudsman had to carve out time to personally perform chores for her two frail family members. Chores included shopping, paying bills, and cleaning their houses.   Scheduling and transportation to doctor appointments and med management took additional time away from her very demanding job and family duties.

            When dealing with her Mother’s finances became just too difficult, Kathy, along with her sister, filed for guardianship.  “If you realize that there are some things you just can’t control, then seek outside services or assistance,” she recommended.  

           “Depending on personality of the person you are taking care of you may have to just step away from being a caregiver, if it impacts on your health,” she says.  “It may become the right time to turn to a nursing home or home care services, to take care of your frail family member.”

           “Make sure you turn to respite care if needed because it is always available”, Kathy suggests.  “You need to know when to seek out this assistance and go on a trip to recharge your batteries. When taking care of your loved one, do not forget your own health, family, or nutrition,” she says. .

 Seeking Respite Care Programs

             Rhode Island will receive $250,000 under the federal Lifespan Respite Care Act to support families caring for aging or disabled individuals with special needs, increasing access to short-term, or respite care. This relief offers family members temporary breaks from the daily routine and stress of providing care to loved ones with special needs.

             You can get information about respite care programs and resources available to care givers by calling by calling the Rhode Island Department of Human Services, Division of Elderly Affairs at (401) 462-3000, or you can go to www.dea.ri.gov. TTY users can call (401) 462-0740.

             The Rhode Island State Ombudsman, at the Alliance for Better Long-Term Care, monitors the quality of the Rhode Island’s nursing homes, assisted living facilities, home health agencies and hospice services, and address issues of elder abuse, guardianship, neglect and financial exploitation.  For more information, call  (401)785-3340.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.