General Assembly: It’s Time to Endorse State Alzheimer’s Plan

Published in the Woonsocket Call on May 12, 2019

Just days ago, the Alzheimer’s Association-Rhode Island Chapter, along with over 75 volunteers and supporters gathered for the group’s Advocacy Day, in the Governor’s statehouse at the Rhode Island State, warning state lawmakers about the increasing incidence in Alzheimer’s disease and its impending impact on state programs and services. According to the Alzheimer’s Association 2019 Alzheimer’s Disease Facts & Figures report, there are now 23,000 people living with Alzheimer’s and 53,000 Alzheimer’s caregivers in Rhode Island. This number will skyrocket as Rhode Island’s population continues to age; they say.

During the two-hour rally, Alzheimer’s advocates pushed for the passage of H 5569, sponsored by Rep. Mia Ackerman (D-Cumberland), and S 310, Sen. Cynthia A. Coyne (D-Barrington), companion measures that would legislatively endorse the newly released State Alzheimer’s Plan.

House Majority Leader Joseph Shekarchi also joined in, calling for passage of H. 5189, his legislative proposal that would create a program under the Department of Health and an advisory council to oversee implementation of programming, requiring training for medical professionals, and establishing Alzheimer’s plans in medical facilities. the Senate companion measure is S 223.

Improving Supports for Those Afflicted with Alzheimer’s

Once the Rhode Island General Assembly passes the legislative proposals to endorses the State Alzheimer’s Plan, the state’s Long-Term Care Coordinating Council’s executive board would seek legislative and regulatory changes to carry out its bold set of recommendations for improving supports to those afflicted by Alzheimer’s and other dementias. But this legislation is stalled.
Twenty-three town meetings,45 expert interviews, combined with a survey of 200 Rhode Islanders impacted by Alzheimer’s, enabled Columbia, Maryland-based Splaine Consulting, a nationally recognized health policy firm, to pull together the content for the State Alzheimer’s Plan. More than 30 recommendations are detailed in this 35-page plan to combat the devastating mental disorder which calls for the implementation of three main recommendations.

The updated State Plan provides Rhode Island with the framework to cooperatively address the full range of issues surrounding Alzheimer’s and other dementias. It will be the blueprint that allows us to take unified, targeted action against the disease, says Lieutenant Governor Daniel McKee McKee, who serves as chair of the state’s Long-Term Care Coordinating Council (LTCCC).

McKee’s LTCCC served as the organizational umbrella for a workgroup, including the Alzheimer’s Association– Rhode Island Chapter, the state’s Division of Elderly Affairs, researchers, advocates, clinicians and caregivers oversaw the development of the newly released State Plan.

“Our updated plan will also position the state, local small businesses and nonprofits to take advantage of federal and other funding opportunities aimed at fighting Alzheimer’s disease,” says McKee.

“Unless we move quickly to address this crisis and find better treatments for those who have it, these costs will grow swiftly in lock step with the numbers of those affected, and Alzheimer’s will increasingly overwhelm our health care system. We must decisively address this epidemic,” says Donna M. McGowan, Executive Director of the Alzheimer’s Association–Rhode Island Chapter, who came to the May 7 news conference on Smith Hill to put Alzheimer’s on the General Assembly’s policy radar screen.

Taking Bold Actions to Confront Alzheimer’s Epidemic

“State government must address the challenges the disease poses and take bold action to confront this crisis now. Alzheimer’s is a growing crisis for our families and the economy. That’s why we are unrelenting advocates for public policy that advances research and improves access to care and support services,” says McGowan.

“Alzheimer’s disease and its impact on society is not only a growing public health concern, it very well may be the next biggest public health emergency that we as policymakers need to address,” said Rep. Ackerman. “We’ve already begun crafting legislation that will establish a program in Rhode Island to address the disease,” she says.

Rep. Ackerman used the Alzheimer’s news conference as a bully pulpit, calling on hospitals, researchers, medical professionals, state agencies, and state law makers to act swiftly to address the looming public health crisis.

“There are many factors to be considered in the great work ahead of us,” Rep. Ackerman said. “From early detection and diagnosis, to building a workforce capable of handling the unique health care needs of Alzheimer’s patients. This is something that will take a lot of effort and a lot of time. Now is the time to get to work on this,” she notes.

Like Rep. Ackerman, Sen. Coyne called for the General Assembly to endorse the State Alzheimer’s Plan and also supported Shekarchi’s legislative proposal, too. She also promoted a bill that she put in the legislative hopper that would allow spouses to live with their partners in Alzheimer’s special care units. Allowing couples to live together would help maintain patients’ relationships, connections and personal dignity, she said.

Rose Amoros Jones, Director of the Division of Elderly Affairs(DEA), noted that the power to the Alzheimer’s Association – Rhode Island Chapter’s Advocacy Day creates connections to people that can influence policy and shine light on the supports and information that families need. “Connection is a core value at DEA – as is choice, she said.

Sharing personal stories, Melody Drnach, a caregiver residing in Jamestown, talked about the challenges of taking care of her father with dementia. From her personal caregiving experiences, she agrees with the updated plans assessment that Rhode Island is dramatically under-resourced to address today’s needs.

Marc Archambault of South Kingstown, who has been diagnosed with the disease, came, too, talking about his efforts to cope with the devastating disorder.

At press time, both Rep. Shekarchi and Rep. Ackerman’s Alzheimer’s proposals have been heard at the committee level and have been held for further study, some call legislative purgatory.

Alzheimer’s Impacts Almost Everyone

The devastating impact of Alzheimer’s may well touch everyone in Rhode Island, the nation’s smallest state. Everyone knows someone who either has Alzheimer’s or dementia or is a care giver to these individuals. It’s time for the Rhode Island General Assembly to endorse the State’s Alzheimer’s Plan especially with no fiscal cost. We need a battle plan now more than ever to effectively deploy the state’s resources to provide better programs and services to those in need and to support caregivers.

Call your state representatives and Senators and urge that H 5569 and S 310 are passed and sent to Governor Gina Raimondo to be signed. For contact information, call Eric Creamer, Director of Public Policy and Media Relations, Alzheimer’s Association – Rhode Island Chapter, (401) 859-2334. Or email ercreamer@alz.org.

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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…

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.

Midterm Elections are Here: Your Vote Sends a Message to Congress

Published in the Woonsocket Call on November 11, 2018

The mid-term elections are here and Americans have an opportunity, if they choose to vote, to send a strong message to Capitol Hill about what policy issues are important to them. All 435 Congressional seats are on the ballot including 35-Senate seats. The outcome of these political races will ultimately impact older Americans. Will Congressional lawmakers work to ensure the solvency of Social Security and Medicare, or protect those with pre-existing conditions? Or will they put political differences aside to craft legislation that will put the brakes to spiraling prescription drug costs.

Last month, AARP released, a 52-page report, “2018 Mid-Term Election Voter Issue Survey,” that found that the majority of those surveyed say the following issues will help them make their voting decisions in days: lowering health care costs (79 percent), strengthening and reforming Social Security (75 percent) and Medicare, (70 percent) and putting the brakes to skyrocketing prescription drug costs (74 percent).

AARP’s survey data were collected by Alan Newman Research (ANR) between July 7 and July 18, 2018. ANR conducted a total of 802 telephone interviews of registered likely voters age 50 and older. All data were weighted by education, race/ethnicity, age, gender, and census division according to Current Population Survey statistics provided by AARP.

What Issues Are Important to Older Voters?

Let’s take a closer look at AARP’s July telephone survey findings…

The top issue for the Democratic survey respondents was health care costs, Social Security, drug costs and Medicare while Republicans identified national security as their issue.

People become eligible for health insurance through Medicare when they turn age 65. Democrats responding to the AARP survey (77 percent) were more likely to support giving those age 50 to 64, the option to buy health insurance through Medicare than the responding Republicans (57 percent).

Vermont Senator Bernie Sanders and other lawmakers have proposed a national health plan in which all Americans would get their insurance from a single
government plan (called Medicare-for-All). The researchers noted that Democratic respondents gave the thumbs up (75 percent) to supporting this legislative policy while only 34 percent of the Republican respondents supported the health care policy.

The AARP survey also found that 66 percent of the respondents supported allowing Medicare to negotiate lower prescription drug costs to increase the solvency of the program.

Last year, Congress passed legislation that required pharmaceutical companies to contribute more to contribute more to close the Medicare Part D coverage gap to reduce the high out-of-pocket cost of drug costs. The pharmaceutical lobby is working to reverse this requirement. The AARP survey found that 78 percent of the age 50 and over respondents support the existing requirement to contribute more to close the Medicare Part D coverage gap.

Federal law prohibits insurance companies from charging those with pre-existing conditions more for health coverage. While some want to repeal this law because they believe the person should pay more, others say that paying a higher premium is unfair. The AARP survey found that 84 percent of the women and Democrats surveyed were more likely to say that the higher costs of health care is unfair for those with preexisting conditions.

Current federal law allows insurance companies to charge up to three times more for health insurance for those over age 50. Some Congressional lawmakers propose increasing this charge up to five times more for health insurance. Eighty three percent of the older survey respondents oppose this, calling any changes unfair.

Over half of the age 50 older survey respondents have caregiving experiences. Two in five of these respondents believe they will become caregivers. The survey found that 75 percent of the respondent’s support employer requirements for family caregiving. The requirements include: ensuring that employees can not be fired for taking time off for caregiving; allowing the use of existing sick leave for caregiving activities; allowing a limited amount of unpaid and paid leave for use by caregivers.

Eighty seven percent of the AARP survey respondents believe Congress should pass laws to protect caregivers from being fired for taking time off to care for a loved one. Most of these respondents (88 percent) also believe that stronger laws are needed to protect older workers from age discrimination.

Currently, there is discussion on Capitol Hill about the need for a rule that requires professional financial advisors, when giving advice to their older clients about their retirement savings accounts, to give advice that is in the best interest of these individuals. The AARP survey found that 69 percent of the survey respondents agree to this rule.

Phone App Informs Older Voters on Aging Issues

The Washington, DC-based AARP today launches “Raise Your Voice,” the nation’s first comprehensive advocacy and voting app for smart speakers (works on Amazon Alexa and Google Home) . The voice-enabled experience is designed to help older voters to use smart speakers to become educated on a wide range of aging issues — including Social Security, Medicare, prescription drugs, Medicaid and caregiving.

“This groundbreaking skill empowers voters at a time when people are looking for trustworthy, accessible sources of information,” said John Hishta, AARP Senior Vice President of Campaigns, in a statement announcing the Oct. 11 release of the phone app.

To invoke the app, the user simply says their smart speaker’s wake command, followed by “Open Raise Your Voice.” With days before the upcoming midterm elections, the user can direct “Raise Your Voice” to look up polling information and send it directly to the user’s cell phone. Similarly, the user can command the app to provide information on AARP issues.

“Traditional voter education is laudable and important work, but it’s a leap forward to develop technology that better supports voters as they seek out the location of their polling place, information on key issues, and the ability to contact their elected officials,” said Sami Hassanyeh, AARP Senior Vice President of Digital Strategy and Membership. “

The app is available at http://www.aarp.org/raiseyourvoice.

Send a Message to Congress

Robert Roach, Jr., President of the Washington, DC-based Alliance for Retired Americans, calls on older voters to “Know your rights before heading to the polls.” Your state’s Secretary of State’s website can provide details about voter identification requirements and other laws. If you are encountering problems with voting or suspect voter rights at your polling site, seek out an elected official to discuss, suggests Roach. Also, call the voting rights hotline at 1-866-OUR-VOTE (687-8683).

“Bring a snack, a book and even a chair if you think there may be a line. Don’t go home until your vote has been counted,” says Roach. “An unfortunate election result could lead to health insurers charging people aged 50-64 five times more than younger consumers for the same coverage. A good result could lead to an expansion of your earned Social Security benefits,” he says.

AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.

It’s Time to Pass RAISE Family Caregivers Act

Published in the Pawtucket Times on September 18, 2017

Editor’s Note: Four months after S. 1028, titled the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was introduced in the Senate, an updated House companion bill (H.R. 3759) gets dropped into the chamber’s legislative hopper. On September 13, Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL) along with original cosponsors Reps Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY) introduced the legislation that calls for the development of a strategy to support family caregivers. It was referred to House Committee on Education and the Workforce. At press time, Rep. David Cicilline (D-RI) will shortly become a cosponsor of H.R. 3759.

On May 3, Sens. Susan Collins (R-ME), the Chairman of Senate Aging Committee, and Tammy Baldwin (D-WI) reintroduced the RAISE Family Caregivers Act, with Sens. Lisa Murkowski (R-AK) Michael Bennet (D-CO) signing on as cosponsors. At press time, there are now 12 cosponsors. Sen. Collins and Baldwin and Reps. Harper and Castor first introduced the family caregiver legislation in July 2015, and it passed the Senate unanimously in December 2015.

Eight days later the Senate Health, Education, Labor and Pensions Committee unanimously passed this legislation by a voice vote later that month and the bipartisan legislation will now be considered by the full Senate.

The Nuts and Bolts

The House bill introduced this week is updated from the Senate version introduced in early May. That Senate version is almost identical to the Senate-passed version from 2015.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new
developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is
authorized and it would sunset in five years.

This bipartisan caregiver legislation has been endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the w Michael J. Fox Foundation and the Arc.

Shouldering Caregiver Burdens

“Every day, more than 40 million ordinary Americans take on the challenge of caring for parents, spouses, children and adults with disabilities, and other loved ones so they can live independently at home and in their communities,” says AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “The RAISE Family Caregivers Act is a commonsense, bipartisan step to recognize and support our nation’s family caregivers. AARP appreciates the leadership of Representatives Harper and Castor, and we urge Congress to pass this important piece of legislation,” she notes.

According to LeaMond, the nation’s family caregivers assist loved ones with eating, bathing, dressing, transportation, medical tasks, managing finances, and more. Many do this while working full time and raising families. The unpaid care family caregivers provide—37 billion hours valued at about $470 billion annually—helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.

“Caregiving is, in one way or another, now an inevitable part of everyone’s future,” said AARP Rhode Island State Director Kathleen Connell. “It has been said that if you ask people about caregiving they fall into one of three or more categories: They know a caregiver, they are a caregiver or they will require a caregiver. AARP works hard at the state and federal level to direct resources and support to family caregivers. In Rhode Island, we have fought successfully for temporary caregiver insurance (TCI), the CARE Act, accessory dwelling unit legislation and a new fund to help offset the cost of ‘livable’ home improvements that benefit caregiving and make aging in place easier.”

“In the upcoming special session of the General Assembly, another key caregiving bill will be before lawmakers,” Connell added. “Earned Paid Sick Leave will be especially helpful to working family caregivers whose employers do not offer paid time off. Temporary caregiver insurance requires several days advanced notice. That can be helpful, for example, if a family member has a scheduled test or medical procedure. Earned paid sick leave would allow employees to used paid sick time when they are called away to attend to immediate emergencies.”

“The RAISE Family Caregivers Act is intended to provide a policy framework for improving caregiver support from national level down to states, cities and towns. In short, where the caregiver rubber meets the road,” Connell said.

Caregiver Legislative Proposal a Bipartisan Issue

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregivers step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

With many caregivers putting their own health at risk, experiencing experience high-levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression, these individuals need the support and assistance that the enactment of the RAISE Family Caregivers Act could help bring about. Both sides of the aisle must put their political differences aside and push for passage. Both Republicans and Democrats shoulder caregiving duties.

Quickly passing the RAISE Family Caregivers Act in the Senate and House and sending it to the desk of President Donald Trump for his signature is the right thing to do.

Report Hones in on Caregiving Costs

Published in Woonsocket Call on November 20, 2016

On the last day of October, a 537 word proclamation issued by President Barack Obama proclaimed November 2016 as National Family Caregiver (NFC) month. In this official decree the president encouraged the nation to pay tribute to 90 million caregivers who work tirelessly care for family members, friends, and even neighbors.

Obama recognizing the nation’s caregivers came about through the lobbying efforts of Caregiver Action Network (the National Family Caregivers Association). The Washington, DC-based group began its efforts to nationally recognize family caregivers in 1994. Three years later, President Clinton signed the first NFC Month Presidential Proclamation and every president since that time has followed suit by issuing an annual proclamation recognizing and honoring family caregivers each November.

On the heels of Obama’s signed proclamation comes the release of a new AARP report that details the out-of-pocket cost of caregiving. According to researchers, family caregivers spend an average of nearly 20 percent of their income providing care for a family member or other loved one. Along with increased out-of-pocket (OOP) expense, the study also explores other financial and personal strains that family caregivers may experience as result of their caregiving activities.

The Financial Strain of Caregiving

AARP’s 56 page research report “Family Caregiving and Out-of-Pocket Costs: 2016 Report,” noted that caregivers spend an average of $6,954 in OOP costs related to caregiving, with Hispanic/Latino and low-income family caregivers spending an average of 44 percent of their total annual income.

“This study spotlights the financial toll on family caregivers – particularly those with modest incomes,” said AARP Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “Whether helping to pay for services or make home modifications, the costs can be enormous and may put their own economic and retirement security at risk. As a nation, we need to do more to support America’s greatest support system. Passing the bipartisan Credit for Caring Act that provides a federal tax credit of up to $3,000 would give some sorely needed financial relief to eligible family caregivers.”

AARP’s report, released November 14, 2016, determined the amount of money that family caregivers spent over the last year providing help or assistance to a loved one. Certain groups of family caregivers spend disproportionately more in OOP expenses, said the researchers.

AARP’s report, prepared by Chuck Rainville, Laura Skufca and Laura Mehegan, noted that family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average. They are earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.

Family caregivers caring for adults with dementia spend nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758), the AARP report found.

Cultural Diversity and Caregiver Costs

Researchers looked at cultural diversity as it related to OOP expenses of family caregivers. According to their findings, Hispanic/Latino family caregivers spend an average of $9,022 representing 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616 or 34 percent, white family caregivers spend $6,964 or 14 percent, and Asian Americans/Pacific Islanders spend $2,935 or 9 percent.

As expected, long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.

The AARP report notes that increased OOP forces family caregivers to dip into savings, cut back on personal their spending, and they save less for retirement. Some must take out loans to make financial ends meet. Additionally, more than half of family caregivers are cutting back on leisure spending and also reported a report a work-related strain such as having to take unpaid time off.

“Many family caregivers experience a great deal of physical, emotional, and financial strain,” added Susan Reinhard, RN, PhD, Senior Vice President and Director, AARP Public Policy Institute. “This report highlights why AARP supports the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act that would require the development of a national strategy to support family caregivers.”

AARP Rhode Island State Director Kathleen Connell says that AARP’s recently released report verifies what most family caregivers know all too well: Providing for a loved one challenges caregivers in many ways and out-of-pocket expenses certainly is one of them, she says.

“In conversations I’ve had with caregivers over the years, I have found most all consider their efforts a responsibility as well as a labor of love. They rarely complain about cost because, I suspect, they try never to characterize caregiving as a burden,” says Connell..

Connell says, “With passage of the CARE Act and its implementation coming in 2017, Rhode Island is among the states leading the way in caregiver support. We cannot rest. You may be a caregiver. You may know a caregiver. You may someday rely on a caregiver. Any way you look at it, you need to be in the conversation about future needs.”

This study of a nationally representative sample of 1,864 family caregivers was conducted by GfK from July 18–August 28, 2016. All study respondents were currently providing unpaid care to a relative or friend age 18 or older to help them take care of themselves.

The full results of AARP’s caregiver report can be found here: http://www.aarp.org/caregivercosts