Tag Archives for caregivers

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.

 

 

Caregivers Must Not Forget Their Own Needs

Published June 8, 2012, Pawtucket Times

           It seems that every where I turn these days, friends, and business colleagues, are being thrust into care giving roles for older family members or spouses.  In today’s hectic world, aging baby boomers and seniors who are now taking on this late-life role can find this new task very demanding and stressful.

            According to the National Alliance for Caregiving and AARP, most aging baby boomers will become informal caregivers at some time during their lives. During any given year, there are more than 65 million Americans (29% of the nation’s population) who provide unpaid care for a chronically ill, disabled, or 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.

            Statistics paint a very detailed picture of the typical family caregiver.  She is a 49-year old, married female who is employed and cares for her 69-year old widowed mother who does not live with her.  Over 66 percent of the nation’s caregivers are women.  More than 37 percent have children or grandchildren 18-years or younger living with them.

The Importance of Taking Care of Yourself

            Connie Goldman, award winning radio producer and reporter whose books have given her readers insights, inspiration, and motivation for personal growth in their mid-life and beyond, sees continuing need for support and services for middle-aged caregivers. 

            Goldman, who authored The Gifts of Caregiving – Stories of Hardship, Hope and Healing, believes the secret of being a successful caregiver is to first take good care of yourself.  Although her book was first published over a decade ago the personal stories that family caregiver have shared continue to offer comfort, insights, and inspiration. Many will benefit from reading the compilation of 30 stories of caregivers who tell their  personal stories of taking care of an ill, disabled or aging loved one.  Goldman notes all of these remarkable people cope with adversity in ways that leave us wondering: “Could I measure up to the challenge?” Most importantly, each of their stories reveals how the hardships of caregiving can be turned into a journey of hope and self-discovery,” she says.

           In her timeless book, Goldman’s interviews include: Dana Reeve (wife of the late actor Christopher Reeve), former First Lady Rosalynn Carter, Pulitzer Prize-winning author Studs Terkel, and others whose lives were forever changed by their care giving experience. There are also personal experiences told by many whose names you won’t recognize, yet their stories offer personal insights that can nurture and nourish   caregivers of any age.

            “Taking on the commitment as a family caregiver opens the door to frustration, irritation, indecision, fear, guilt and stress,” says Goldman, so the caregiver must take care of themselves first. Goldman notes that a mantra she often suggest to post on your mirror, refrigerator, or anywhere else to remind yourself  that you must “Take care of yourself so you can take care of others.”  It is well known that caregivers often lose sleep, don’t eat properly, don’t take breaks, and don’t believe they matter as much as the person who they’re providing care for, she adds.  “Caregivers very often put themselves and their needs last on the list. To be the best caregiver you can be you must care for yourself”.

             According to Goldman, you can be a better, more efficient caregiver if you get enough sleep, eat regular meals, and make a plan to get relief for some period of each day. “I know caregivers are often reluctant to ask a friend to fill in at home while you go to have your hair set, or meet a friend for lunch, or go for a walk in the park. Yet an hour or two away can nourish a caregiver for the next 24 hours,” she says.

             Goldman suggests that caregivers can care for themselves by attending regular support groups, sharing with a friend three things that went right during a day (when everything seems going wrong), or taking a hot bath, reading a magazine, spending a bit of  time in your garden, taking a short nap, or eating a chocolate bar!   It’s often the little things that count in surviving each day and the challenges of being an aging baby boomer caregiver or taking on the caregiver role at any age.  

 Taping into Resources…

             It is difficult for many caregivers navigate the long-term care system to find the most appropriate programs and services to keep their loved ones at home.  According to the Rhode Island Department of Human Services, Division of Elderly Affairs, the National Family Caregivers Association (NFCA) might just provide that crucial information for caregivers.  The Kensington, Maryland-based clearing house (at www.nfcacares.org) offers information on a variety of topics including, stress and family caregiving, caregiver advocacy, care management techniques, support groups, communication with health care professionals, reaching out for help, and other issues.  For more information about the books written by Connie Goldman, go to www.congoldman.org your local bookstore or Amazon.com

            Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries appear in two daily newspapers, The Pawtucket Times and Woonsocket Call.