Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

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New AARP Study Takes a Close Look at America’s Grandparents

AARP’s newest research study, highlighting the latest trends, gives us a peek into the world of grandparenting, a role that millions of Americans now take on in their later years. This number has steadily grown, from 56 million in 2001 to a whopping 70 million today.

The youngest grandparent is about 38 years old, with 50 being the average age of becoming a first-time grandparent, notes Brittne Nelson-Kakulla, AARP Research’s Senior Research. For those with children, by age 65, 96 percent of Americans are grandparents, she says.

“Today’s grandparents are an economic force that cannot be ignored,” said Alison Bryant, senior vice president of research, AARP, in an April 8 statement with the release of this 40-page report. “They are living longer, working longer, shattering stereotypes and supporting their grandchildren in a variety of ways, including financially and culturally. Nearly all grandparents are providing some sort of financial support, helping to ease the costs of raising kids,” notes Bryant.

Grandparents Pump Billion’s into Nation’s Economy

According to AARP’s study, 70 million grandparents can have a major impact on the nation’s economy. Grandparents spend money on their grandchildren, an average of $2,562 annually, this equaling approximately $179 billion dollars per year. Those dollars are spent supporting their grandchildren in a variety of ways, from helping to pay day-to-day expenses (meals, groceries, etc.) allowances, vacations, and school/college tuition costs.

The study found that grandparents have, on average, four to five grandchildren, down from six to seven in 2011. The number of grandparents in the workforce has increased in the past seven years, with 40 percent of grandparents currently employed up from 24 percent in 2011.

Grandparents enjoy the positive aspects of grandparenting such as supporting dreams and sharing roots, history and culture, and experiences, says the AARP study, but they face financial challenges, too. Thirteen percent of grandparent’s struggle with the financial expectations of being a grandparent, including the cost of education, traveling to see the grandchildren.

Seven percent of grandparents have taken on debt to help their grandchildren pay for college and one in four of those grandparents have even cosigned private student loans for their grandchildren and/or incurred credit card debt that has not yet been paid back in full.

Over the decades, the role of grandparenting has remained consistent, observes the AARP study. Grandchildren continue to refer to grandparents as “grandma” or “grandpa” (70 percent to 60 percent respectively). But, one in twenty of the grandparent respondents prefer to be called by their first name.

Serving as a Source of Wisdom

Eighty one percent of the grandparent respondents say they play a key role in their grandchildren’s life. Over half say that they serve as a “moral compass” to the grandchildren on variety of issues ranging from education, morals to values. But they say that discussing topics on sexuality and politics are way “out of their comfort zone.”

Grandparents also see the importance of teaching gender equality and rising the be strong, independent woman, too, says the AARP study.

Thirty four percent of the grandparents say they have grandchildren of mixed or difference races or ethnicities. Nearly all of the respondents believe it is important that these grandchildren know about the heritage they share. Seven in ten make an effort to help their grandchildren learn about the heritage they do not share, says Nelson-Kakulla.

Sixty eight percent say that distance is the biggest obstacle that keeps them from getting enough one-on-one time with their grandchildren. Fifty two percent of the survey respondents have at least one grandchild who lives or 200 miles away, while 29 percent live over 50 miles from the closest grandchild, up from 19 percent in 2011. Like distance, busy full-or part-time work schedules keep grandparents as well as schedules of their children and grandchildren keep them from connecting.

Grandparents are turning away from making phone calls to maintain contact with their grandchildren, turning to new technologies like email, Facebook, Video Chat and Texting to bridge the mileage gap. Forty seven percent “like” the idea of group texting messages to chat with their grandchildren and 67 percent “like” the idea of using online video chatting to keep in touch.

Finally, 89 percent of the grandparent respondents say their relationship with their grandchildren is good for their well-being and 67 percent believe this role makes them more sociable. Sixty six percent say having grandchildren makes them more active, too.

AARP’s 21-minute online survey of 2,654 grandparents ages 38 and was conducted between August 20 and September 4, 2018.by Hotspex, Inc.

For a copy of AARP’s 2018 Grandparents Today National Survey, contact Brittne Nelson- Kakulla, Senior Research Advisor, AARP Research, at bkakulla@aarp.org.

Attacking Rising Prescription Drug Costs

Published in the Woonsocket Call on April 7, 2019

The Washington, DC-based AARP timed the release of its latest Rx Price Watch report as the House Energy Commerce Committee marked up and passed a dozen bills just days ago, six that would lower prescription drug costs. The legislative proposals now go to the House floor for consideration.

AARP’s new report, a continuation of a series that has been tracking price changes for widely used prescription drugs since 2004, was circulated to House Committee members before their markup and vote and its findings sent a message to the lawmakers that they hear from their older constituents, that is the costs of pharmaceutical drugs is skyrocketing, making it difficult to fill needed prescriptions.

Poll after poll findings reflect the concerns of seniors about their ability to pay for prescribed medications. According to a Kaiser Family Foundation poll released last month, 79 percent of survey respondents view drug prices to be “unreasonable,” while just 17 percent found the costs to be “reasonable.” Twenty-four percent of these respondents found it difficult to pay the costs of their prescription drugs.

Generic Drugs Can Save Dollars

According to the new AARP Public Policy Institute (PPI) report, by Leigh Purvis and Dr. Stephen W. Schondelmeyer, the average annual cost of therapy for one widely used brand-name prescription drug in 2017 was over 18 times higher than the cost of therapy for one generic drug. The cost for a generic medication used on a chronic basis averaged $365 per year. In contrast, the average annual cost for a brand-name prescription drug was $6,798. But, four years earlier the price differential between these same market baskets was substantially smaller ($4,308 verses $751 respectively).

“Generics account for nearly nine out of every 10 prescriptions filled in the U.S. but represent less than a quarter of the country’s drug spending,” said Debra Whitman, Executive Vice President and Chief Public Policy Officer at AARP, in a statement released with the PPI’s 28 page report “These results highlight the importance of eliminating anticompetitive behavior by brand-name drug companies so that we get more lower-priced generic drugs on the market,” says Whitman.

AARP’s PPI report, entitled “Trends in Retail Prices of Generic Prescription Drugs Widely Used by Older Americans,” found that retail prices for 390 generic prescription drugs commonly used by older adults, including Medicare beneficiaries, decreased by an average of 9.3 percent in 2017, compared to the general inflation rate of 2.1 percent. The decline follows two consecutive years of substantial generic drug price decreases; the previous two consecutive years saw increases in generic drug prices. All but three of the 390 generic prescription drugs analyzed in AARP’s report had a retail price change in 2017. While prices for 297 (76 percent) drug products decreased, 90 (23 percent) products had price increases.
Six commonly used generic drug products had retail price increases of greater than 70 percent, including a nearly 200 percent increase for sertraline HCL, an antidepressant, finds the AARP.

AARP’s PPI report found that with older adults taking an average of 4.5 prescription drugs every month, those using generic prescription drugs were likely to have an average annual retail cost of $1,642 in 2017.

“The gap between average annual brand-name and generic drug prices has increased dramatically—brand name drug prices were six times higher than generic drug prices in 2013 but more than 18 times higher in 2017,” said Leigh Purvis, Director of Health Services Research, AARP Policy Institute, and co-author of the report. “As long as brand name drug prices continue to skyrocket, the value of prohibiting brand name drug company practices that slow or prevent competition from generic and biosimilar drugs cannot be overstated.”

AARP Pushes for Passage of Bills to Lower Drug Costs

Before the Committee on Energy and Commerce vote on April 3, in correspondence AARP urged Chairman Frank Pallone, Jr. (D-N.J.) and Ranking Member Greg Walden (R-Ore) to enact two bills (along with four other proposals) being considered at the morning markup session. These legislative proposals would lower prescription drug costs and had previously been approved by the Energy and Commerce Health Subcommittee.

In the correspondence, AARP’s Nancy A. LeaMond, Executive Vice President and Chief Advocacy and Engagement Officer, pushed for passage of H.R., 1499. the “Protecting Consumer Access to Generic Drugs Act of 2019.” introduced by Rep. Bobby Rush (D-IL). This proposal would make it illegal for brand-name and generic drug manufacturers to enter into agreements in which the brand-name drug manufacturer pays the generic manufacturer to keep a generic equivalent off the market. The bill was passed by voice vote.

LeaMond also supported H.R., 965, the “Creating and Restoring Equal Access to Equivalent Samples (CREATES) Act of 2019,” introduced by Reps. David Cicilline (D-RI), Jim Sensenbrenner (R-WI), Jerrold Nadler (D-NY), Doug Collins (R-GA), Peter Welch (D-VT), and David McKinley (R-WV). The proposal would establish a process by which generic manufacturers could obtain sufficient quantities of brand drug samples for testing thereby deterring gaming of safety protocols that brand manufacturers use to delay or impede generic entry. The bill passed by a bipartisan vote of 51-0.

At the markup, Pallone and Walden were able to work out philosophical differences on H.R. 1499 and H.R. 965. The two lawmakers also hammered out a compromise on H.R. 1503, the “Organize Book Transparency Act of 2019,” that would ensure that the Orange book, which identifies drug products approved on the basis of safety and effectiveness by the Food and Drug Administration, is accurate and up-to-date.

Washington Insiders say that Democratic control of the House will ensure the passage of these legislative proposals on the House floor and the bipartisan vote on the CREATES Act in the lower chamber creates an opportunity for Senate Finance Committee Chairman Chuck Grassley (R-Iowa) to successfully push his CREATES Act companion measure in the Senate.

Grassley says the broad, bipartisan action by the House Energy and Commerce Committee to advance the CREATES Act is a major win for consumers. “I look forward to advancing this bill because it will cut down on abuses in the system that keep prices high for patients. I’m also pleased that the committee advanced a bill to address pay-for-delay schemes. Although that bill is not identical to the bill I’ve sponsored in the Senate, the bill’s movement shows that the committee is serious about addressing the pay-for-delay problem,” says the Senator.

As They See It…

AARP’s LeaMond, says “Brand-name drug companies want to stifle generic competition to protect their monopolies and profits. AARP believes that eliminating these deliberate anticompetitive behaviors will result in a more robust generic drug market and greater savings for both patients and taxpayers. The Congressional Budget Office estimated that legislation such as the CREATES Act could save taxpayers more than $3 billion over a decade, and the Federal Trade Commission estimated pay-for-delay deals cost consumers and taxpayers $3.5 billion a year.

“We have long supported the CREATES Act and banning pay-for-delay agreements, and are heartened that Congress is acting to improve access to generic drugs. These bills will promote competition driving down costs for seniors,” says Lisa Swirsky, Senior Policy Analyst, at the National Committee to Preserve Social Security and Medicare.

“Congressman Cicilline has been a leader in our caucus for putting prescription drug prices at the front of our agenda. Moving generics to market faster is an important step to lower prescription drug costs for every American,” said House Speaker Nancy Pelosi. “House Democrats have made it a top priority to lower Americans’ health costs by reducing the price of prescription drugs, and these bipartisan bills show we mean to deliver,” she says.

Congress Gears Up its Legislative Efforts in its Fight Against Age Discrimination

Published in Woonsocket Call on March 3, 2019

With the 116th Congress beginning on January 3, 2019, Congress moves quickly to protect older Americans from rampant age discrimination. It is a key reason why Americans, age 40 and over, are fired or offered buyouts (with younger persons being hired in their place) and why they can’t find work after a period of unemployment and struggle to return to the workforce.

On Valentine’s Day, U.S. Sen. Bob Casey (D-Pa.), Ranking Member of the Special Committee on Aging, with cosponsors Sens. Chuck Grassley (R-Iowa), Patrick Leahy (D-Vt.) and Susan Collins (R-Maine) re-introduced S 485, The Protecting Older Workers Against Discrimination Act (POWADA). The bill was referred to the Senate Committee on Health, Education, Labor and Pensions.

Fixing a Supreme Court Ruling

Over a decade ago, a U.S. Supreme Court ruling in Gross v. FBL Financial Services weakened the Age Discrimination in Employment Act (ADEA) by imposing a significantly higher burden of proof on older workers alleging age discrimination than is required of workers alleging other forms of workplace discrimination. As a result, workers that allege age discrimination must meet an undue legal burden not faced by workers alleging discrimination based on race, sex, national origin or religion. This sent a clear signal to employers: some age discrimination is perfectly fine.

Enacting the bipartisan POWADA bill would restore the pre-Gross standard, recognizing once again the legitimacy of so-called “mixed-motive” claims in which discrimination is a, if not the deciding, factor. It would also reaffirm that workers may use any type of admissible evidence to prove their claims.

Rep. Bobby Scott (D-Va.), Chairman of the House Committee on Education and Labor and seven original cosponsors have introduced a House companion bill, H.R. 1230. Scott’s bill should get traction in the House because it’s referred to his committee.

Rep. David Cicilline (D-R.I), who serves on the House Seniors Task Force, has requested to be added as a cosponsor. “There is no place for age discrimination in this country,” says Cicilline, when explaining his support for POWADA. With the Rhode Island congressman recently being elected to House leadership, taking the position of Chairman of Democratic Policy and Communication Committee, the bill will most certainly get attention.

Here is a sampling of organizations that are lining up to support POWADA: AARP, American Association of People with Disabilities, Leadership Conference for Civil and Human Rights, National Employment Law Project, National Employment Lawyers Association, and National Partnership for Women and Families and Paralyzed Veterans of America.

Efforts Begin in 116th Congress to Tackle Age Discrimination

“As a lawyer I worked on age discrimination cases, and I relied heavily on the ADEA to help workers fight back,” said Casey in a statement released when the bill was thrown into the legislative hopper. “More Americans are continuing to work until later in life and we must recognize and address the challenges they face. We must make clear to employers that no amount of age discrimination is acceptable, and we must strengthen antidiscrimination protections that are being eroded,” said the Pennsylvania Senator.

“The Supreme Court case involving Iowan Jack Gross affected employment discrimination litigation across the country. It’s long past time we clarify the intent of Congress to make sure people like Jack Gross don’t face discrimination due to age,” said Grassley, who served as Chair of the Senate Aging Committee from 1997-2001.

“No matter whether it is a determinative or contributing factor in an employment decision, discrimination is wrong and should be treated as such. I am proud to once again cosponsor legislation that reinforces these fundamental rights for our nation’s seniors,” says Leahy.

Adds, Senator Collins, current Chair of the Senate Aging Committee, “Older employees bring a wealth of knowledge and expertise to the workplace. Individuals who are willing and able to remain in the workforce longer can also improve their retirement security for their golden years. We should do all we can to ensure that these employees are not faced with age-related bias while doing their jobs.”

Adds, Virginia Congressman Scott, who introduced the House companion measure, “Discrimination shuts too many people out of good paying jobs. All Americans – regardless of their age – should be able to go to work every day knowing that they are protected from discrimination.”

AARP Calls for Congress to Act

“We commend these lawmakers for sponsoring this crucial legislation,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer. “Too many older workers have been victims of unfair age discrimination and are denied a fair shake in our justice system. The time for Congress to act is now.”

According to AARP, the legislation is especially needed with the graying of the nation’s workforce. By 2022, 35 percent of the U.S. workforce will be 50 or older, and workers age 65-plus are the fastest growing age group in the workforce. Three in five older workers report they have seen or experienced age discrimination in the workplace. POWADA would restore the ADE’s longstanding protections and fix the same problem under two other civil rights laws.

An AARP survey, “The Value of Experience: Age Discrimination Against Older Workers Persist,” published in 2018, found that older workers still face discrimination at their workplace.

The researchers noted that more than 9 in 10 of these older survey respondents say they see age discrimination as somewhat or very common. At work, more than 61 percent report they’ve seen or experienced age discrimination on the job, and of those concerned about losing their job in the next year, 34 percent list age discrimination as either a major or minor reason. Only 3 percent report they have made a formal complaint to a supervisor, human resource representative, another organization or a government agency.

On the job hunt, almost 44 percent) of older job applicants say they have been asked for age-related information from a potential employer.

The older AARP survey respondents would support the recently introduced POWADA, too. Nearly 59 percent strongly supported strengthening the nation’s age discrimination laws.

We need vigilance at every regulatory level and awareness and compliance in every workplace,” says AARP Rhode Island State Director Kathleen Connell. “Most workers reach a point in their lives when society wants to diminish their relevance and dismiss their knowledge and abilities by simply adding the prefix ‘older-’ to worker or employee. It’s not acceptable and can be proven to be unlawful. I would add that is can be disturbing to many others in the workplace. We all get older every day. No one – even younger workers – should be comfortable thinking it is okay to deny employment, harass or terminate someone on the basis of age.

“The problem goes beyond hiring and firing or being denied a promotion over a younger, less capable co-worker,” Connell added. “Day to day negative comments that point to age or suggest someone should just retire ‘and give someone younger a chance to advance’ also can make people feel disrespected and vulnerable. POWDA is important because it codifies the notion we all have to take this as seriously as other, more familiar, types of workplace discrimination.

“Age discrimination is a big part of AARP’s effort to ‘Disrupt Aging,’” Connell Concluded. “As promised at http://www.aarp.org/DisruptAging (and in CEO Jo Ann Jenkins’ book of the same title), AARP ‘will celebrate all those who own their age. We will hold a mirror up to the ageist beliefs around us. We will feature new ways of living and aging, and the products and solutions that make this possible. We will partner with companies and communities to create new solutions that work for all of us at any age. And we will get this story — our story — out there. It’s time to change the conversation.’

“Society as a whole needs to be a part of this change. Everyone will benefit now and when they are … older.”

Third Time’s the Charm

In 2009, the initial POWADA bill was introduced in the Senate chamber by Grassley and Sen. Harkin (D-Iowa). No action was taken. In 2015 Casey and Sen. Mark Kirk (R-Illinois) reintroduced it. Again no action was taken. Now, with the POWADA bill again being reintroduced this month, Congress now has the opportunity to make the needed legislative fix to a Supreme Court ruling to restore protections of the ADEA to older workers. Congressional action will put the brakes to an epidemic of age discrimination complaints. Those pushing for passage express the hope that “The third time is the charm.” Yes, it is finally time to pass POWADA once and for all.

Any individual who believes that they have been or are being the victim of age-related employment discrimination can call the RI Commission for Human Rights at (401) 222-2661 or visit the office at 180 Westminster Street, 3rd floor, in Providence, to talk with staff to file a complaint.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, healthcare, and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

Government Shutdown Hurts Seniors, Too

Published in Pawtucket Times on January 21, 2019

At press time, the federal government has been partially shut down for over 29 days because of Democrats and Republicans being at odds over President Trump’s ask for $5.7 billion to be included in continuing spending resolutions for the Oct. 1 start of the new federal fiscal year. Trump calls for billions of dollars to build a border wall along the 234 miles of the nation’s southern border.

The partial shutdown began on Dec. 22 because Congress had not passed legislation, signed by the President, to fund nine federal departments, so these departments do not have funding to operate. The department’s include Agriculture (USDA), Commerce, Justice, Homeland Security, Housing and Urban Development (HUD), Interior, State, Transportation and Treasury.

During the partial government shutdown, Trump has so refused to retreat from his request for funding to build a wall. With strong Democratic opposition the political standoff has made this partial shutdown the longest one of its kind in the nation’s history. There have been 21 shutdowns since 1976.

Local media has widely reported that this shutdown has left 800,000 federal workers furloughed without pay, as well as those working in several federal agencies. But half of these employees are still working, being recalled but without being pay. But Trump has signed legislation this week to pay these employees retroactively once a funding bill is enacted.

What About Aging Programs and Services?

According to AARP’s Senior Writer Dena Bunis in a Jan. 18th web article, “Essential Services Stay in Place Despite Massive Federal Employee Furloughs,” the government shutdown does not impact major domestic programs, like Medicare, Medicaid and Social Security but other programs and services for seniors are affected.
Medicare, Medicaid and Social Security will continue operating and not be disrupted by the shutdown because these programs are funded by an advance appropriations and Social Security [ an earned benefit] is separately funded, says Bunis.

Bunis adds, even with the shutdown aging veterans will still have access to VA hospitals, medical centers and clinics because the Department of Veterans Affairs is funded.

Retirees will find many of the nation’s 400 national parks open but having limited services. Park rangers are furloughed and volunteers are stepping up to help where needed, says Bunis, noting that with employees not reporting for work, bathrooms and other facilities remain unattended with trash piling up and vandalism reports are increasing.

Although flights are not affected and air traffic controllers remain working, Transportation Security Administration’s airport security screeners are calling in sick in large numbers, increasing waiting times, notes Bunis. She says that Federal Aviation Administration has brought back thousands of safety inspectors and engineers to keep the planes in the air flying safely.

Seniors receiving SNAP (formerly called food stamps) from the USDA can expect getting their February benefits, says Bunis, but Meals on Wheels and the Commodity Supplemental Food Program food-box deliveries will be available through March.

Bunis notes that the U.S. Food and Drug Administration has brought back nearly 150 furloughed employees without pay “to resume safety inspections on certain drugs, medical devices and high-risk foods, such as cheese, fruits and vegetables, and infant formula.”

The current government shutdown has closed the Equal Employment Opportunity Commission (EEOC). Those workers age 40 and over who file age discrimination claims may experience difficulties in applying and getting these claims processed, says Bunis.

USDA loans for low- and moderate-income Americans who live in rural areas have stopped because of the shutdown, says Bunis. “The Federal Housing Administration is not issuing the needed paperwork for reverse mortgages to get approved. More than 1,000 contracts between HUD and landlords who provide rental assistance to low-income tenants have expired, and hundreds more will expire in February,” she notes.

Meanwhile, USDA has recalled 2,500 Farm Service Agency employees to temporarily assist agricultural producers with existing farm loan payments to ensure they get the tax documents necessary to file their returns, says Bunis.

It’s tax season…Bunis says that although the Internal Revenue Service is affected by the shutdown because it is part of the Treasury Department, over 46,000 furloughed employees have been called back to work to process income-tax returns and refunds. Filing season officially begins on Jan. 28.

Casey Calls on Trump to Reopen Government

Last week, U.S. Senator Bob Casey (D-PA), Ranking Member of the U.S. Senate Special Committee on Aging, urged Trump to end the partial shutdown charging that the federal government’s closing jeopardizes the transportation, housing, and nutrition needs of older Americans and people with disabilities.

“I am particularly concerned about the adverse impact of the shutdown on seniors, people with disabilities and their families,” stated in Jan 15 correspondence to the President. Food assistance programs administered through the UDSA, rental assistance payments from HUD, transportation services through the Department of Transportation (DOT), and frauds and scams investigations and enforcement by the Federal Trade Commission (FTC) and Federal Communications Commission (FCC) are all negatively impacted during the shutdown, said Casey.

“Elected and appointed officials in Washington have a sacred responsibility of ensuring seniors can age with dignity and people with disabilities can live independently. I request you direct the USDA, HUD, DOT, FTC and FCC to provide additional information to Congress on the steps they will take to mitigate the harmful impact this shutdown will have on seniors and people with disabilities. And, I urge you to reopen the government so that the health and financial security of our aging loved ones are no longer put in jeopardy,” Casey adds.

For a copy of Casey’s correspondence, go to http://www.aging.senate.gov/press-releases/casey-to-trump-the-shutdown-hurts-seniors_.

Caregivers Taking Care of Persons with Dementia Have Unique Needs

Published in the Woonsocket Call on December 9, 2018

Being a caregiver 24/7 to a person in relatively good health is a tough job. But, caring for someone with dementia, becomes a 36 hour, say Authors Nancy L. Mace and Peter V. Rabins, in their ground-breaking book (published in 1981) on providing care for those with the devastating mental disorder.

The Washington, DC-based AARP releases survey findings last month that takes a look at this “unique subset of caregivers” who are taking care of persons with dementia and other cognitive disorders. Caregiving takes a physical, and emotional toll on these individuals, forcing them to put in longer hours providing care and making adjustments at work and in their personal relationships, says the findings of the newly released study.

The AARP online national survey (of caregivers 18 and older) takes a look at the demands on 700 caregivers taking care of persons with dementia or other forms of cognitive impairments (most often their parents), as well as 400 caregivers who were providing care for a loved one without dementia. Regardless of the situation, on average, caregivers report having been caring for their loved one for almost 3 years.

“Family caregivers take on big responsibilities that can be physically, emotionally and financially challenging. AARP’s new research shows that this can be particularly true for those caring for loved ones with dementia,” said Nancy LeaMond, AARP Chief Advocacy and Engagement Officer, in a statement released with the study report, Caring for People with Dementia: Caregivers’ Experiences. “That’s why AARP has developed resources to help family caregivers balance their own needs with the needs of their loved one,” adds LeaMond.

The AARP Study Found…

Obviously, it is time consuming to be a caregiver. The AARP Survey’s findings, released on November 30, 2018, found that 7 in 10 of those surveyed spend less time with friends and more than half spend less time with other family members because of the intensity of caregiving responsibilities While 75 percent of the survey respondents reported that caring for someone with dementia has brought about closer relationships and more meaning to their lives, the findings also indicate that caregiving experiences bring greater challenges to their lives, too.

According to the 26-page AARP report’s findings, those caring for persons with dementia (more likely a parent) spend on average 13.7 hours per week caregiving while caregivers, taking care of persons with no cognitive afflictions, spend 11.7 hours (more likely a spouse or partner or a friend or neighbor). Three in ten of the caregiver respondents (over age 35) spend over 21 hours per week caregiving, says Study’s findings.

Most of the caregiver respondents providing care to persons with dementia see the devastating disorder’s slowly progressing over time. But younger caregivers perceive that the onset of cognitive decline as suddenly happening.

About 32 percent of the caregiver respondents providing more intense caregiving to persons with dementia say managing their emotions and the demands of care (26 percent) they deliver as the biggest challenges the face.

Caregivers taking care of persons with dementia also reported negative health behaviors. They slept less (71 percent), had more anxiety (65 percent) and depression (54 percent), and spent less time on themselves and with their friends. Research studies reveal that social isolation and loneliness are linked to poorer physical and mental health outcomes.

Not only are the millions of family caregivers for those with dementia less socially connected, they are significantly more likely to put off medical care – over half (55 percent) have done so, compared to just 38 percent among the total caregiver population. However, there were positive health behaviors identified in the poll as well – 79 percent took steps to maintain or improve their brain health and 47 percent exercised more.

About 62 percent of those taking care of persons with dementia state that their intense caregiving responsibilities have led them to working different hours, leaving work early (62 percent) or take paid (53 percent) and unpaid time off (47 percent) for caregiving duties, and also worry about their finances.

But, two-thirds of all caregivers surveyed say they feel closer to their loved one, but those taking care of persons with dementia were more likely to say their relationship with their loved one over time had grown further apart (22 percent) than others. Those caregivers of persons with dementia were more likely to say the relationship with other family has been strained.

Finally, caregiver respondents say that they are receiving what they need from health care providers yet those caring for someone with dementia also have sought out more information about caregiving and from a greater variety of sources.

The AARP survey was conducted October 1-10, 2018. Data are weighted by income, gender, and age according to caregiver benchmarks obtained in Caregiving in the U.S. (2015).

Finding Caregiver Resources

AARP helps family caregivers find the information and support they need to manage their own care along with their loved one’s care. Go to http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Dementia Care Guide and the Community Resource Finder.

For more info, contact AARP Researcher G. Oscar Anderson at ganderson@aarp.org.

AARP Survey Gives a Snapshot of Midterm Election Results

Published in the Woonsocket Call on November 25, 2018

Before November 6, President Donald J. Trump and Congressional Republicans rolled the dice betting on what midterm election issues would propel them to a midterm election victory in retaining control of Congress. But the results were a mixed bag. While maintaining a majority in the Senate, the GOP lost control of the lower chamber.

Many were surprised that the Republican-controlled White House and Congress did not tout an improved national economy, but chose to focus their campaign attack ads on the intense Democratic attack on Judge Brett M. Kavanaugh’s character during his Supreme Court nomination hearing, a caravan of thousands of immigrants marching to the U.S.-Mexico border to escape poverty and violence in Guatemala, Honduras, and El Salvador and law and order. Democrats put their chips on access to health care, Social Security, Medicare, and putting the brakes on skyrocketing prescription drug costs.

Although the GOP maintained control in the Senate (by a majority of 52 to 47), voters put the Democrats in control of the House, with the winning of 232 seats, reaching the magical number of 218 seats, required to take control of the chamber.

Health Care a Key Issue for Voters in Midterm Election

Just days ago, the Washington, DC-based AARP released findings of a national poll of general election voters, along with over samples in both 39 GOP-held seats that flipped to a Democrat and 37 GOP-held seats targeted as competitive by the Cook Political Report that held for the GOP.

AARP’s bipartisan post-election poll, fielded jointly by Fabrizio Ward and Benenson Strategy Group, found that, for 50-plus voters, Social Security, Medicare, and health care were their top midterm issues, pushing them to vote. The 2,800-voter survey (of General Election voters) also indicated age 50 and over voters across the board are also concerned about bipartisan bickering and gridlock inside the Washington, DC – Beltway, saying they favored a candidate who will work across the aisle.

“Older Americans were crystal clear that health care was the most important issue in this election,” said John Hishta, AARP Senior Vice President of Campaigns in a statement announcing the release of the 22-page report detailing survey findings on November 16. “They want Congress to come together to find commonsense solutions to lowering health care costs and they can start by preventing drug companies from price gouging older Americans and all taxpayers.,” says Hishta.

Adds Tony Fabrizio, of Fabrizio Ward, “Fifty plus voters chose Donald Trump by a wide margin two years ago. This year they were instrumental in Democrats retaking the House. They have become a formidable swing voting block for 2020.”

“This election made it clear that candidates and parties can’t build a winning-coalition without older Americans – or take their vote for granted.” said Amy Levin, Partner Benenson Strategy Group.

Taking a Closer Look…

The AARP survey revealed that while voter survey respondents under age 50 were more likely to identify as Independents, those age 50 and over were most likely to affiliate as either Democrat or Republican.

According to the AARP survey, for age 50-plus voters, concerns about Social Security (83 percent), Medicare (79 percent) and health care (79 percent) were their top midterm issues. However, younger voters find education (67 percent), health care (64 percent) and the economy (66 percent) to be most important to them.

The findings clearly show that the surveyed voters sent a message at the polls on November 6 that they want Democrats and Republicans to govern and not to not get mired down in political gridlock. In GOP-held districts that Democrats flipped, 63 percent of the age 50 and over voters wanted elected officials to work in a bipartisan manner. For districts the GOP held, 65 percent of voters felt the same way. While voters of both political parties expect more political gridlock, younger voters surveyed were even more pessimistic when compared to age 50 voters that this could happen.

AARP’s post-midterm election survey revealed that a pink wave was key in electing Democratic candidates, say the pollsters. Age 50 and over women were instrumental in the Democrat’s in gaining House seats — they favored a Democrat for House by 12 percent in the districts Democrats flipped.

The AARP survey found that the majority of survey respondents approved many of Trump’s policies, while almost 2/3 disapproved of him personally. The pollsters also noted that in districts held by the GOP, 55 percent of age 50-plus voters approved of President Donald Trump’s policies and 38 percent approve of him personally.

But the AARP survey revealed that voters nationally and in Dem Flips wanted a check on Trump, especially the independent voters. Obviously, GOP Hold
districts voters were more favorable to Senate and House candidates who supported Trump ‘s policy agenda. Age 50 and over voters wanted a check on Trump (by 6-points), this being smaller than the margin of voters under age 50.

Both Democratic flips and GOP Hold Districts were whiter and older than the nation as a whole, but Democratic Flips took places in districts that were more suburban, educated and affluent. But, key to the Democratic national successes in both the Dem Flip & GOP Hold segments was Independents age 50 and over voting Democrat by double digit margins across the board.

Meanwhile, while less Democratic friendly than voters under age 50, those age 50 and over narrowly favored the Democratic candidate both nationwide and in districts Democrats flipped from Republicans. And, their support for Republican candidates in the GOP Hold districts helped Republican losses from being even worse.

In October, AARP released, a 52-page report, “2018 Mid-Term Election Voter Issue Survey,” that found that the majority of those surveyed said that they would vote for candidates that supported lowering health care costs, strengthening and reforming Social Security and Medicare, putting the brakes to skyrocketing prescription drug costs. AARP’s post-election survey clearly mirrors these priorities.

With the 116th Congress convenes on January 3, 2019, Republican and Democratic lawmakers along with President Trump must work to put aside their political differences and govern by crafting bipartisan legislation that benefits the nation. As can be seen by AARP’s bipartisan post-election survey, voters demand this.

For more details on the survey’s findings, call Colby Nelson at (202) 434-2584 or email, cnelson@aarp.org.