Tag Archives for Rhode Island Chapter of the Alzheimer’s Association

Efforts to Revise State Alzheimer’s Plan are in Full Swing

Published in Woonsocket Call on February 25, 2018

By Herb Weiss

Lt. Governor Dan McKee is gearing up Rhode Island’s fight against the skyrocketing incidence of Alzheimer’s disease, called by some as one of the ‘biggest epidemics in medical history.’ Last Wednesday, he announced $30,000 in grants secured by his office and the Rhode Island chapter of the Alzheimer’s Association to hire a consultant to update the state’s five-year plan on Alzheimer’s Disease and Related Disorders. Tufts Health Plan Foundation and the Rhode Island Foundation each pledged $15,000 to support the rewriting of the initial State Plan.

Updating the State’s Alzheimer’s Plan

The updated State Plan, to be created by a collaborative effort of the Rhode Island chapter of the Alzheimer’s Association, the Division of Elderly Affairs and the Office of the Lt. Governor, will provide state lawmakers with a road map for the state, municipalities and the health care system, to confront the continuing Alzheimer’s crisis. It will take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and outlines what steps the state must take (legislatively and regulatory) to improve dementia-capable programs and services for people with Alzheimer’s and their family caregivers.

Lt. Governor McKee and the Executive Board of the Alzheimer’s Disease and Related Disorders, a working group of comprised of distinguished researchers, advocates, clinicians and caregivers, are now beginning their efforts to meet their deadline by the end of 2018 of having a completed state plan to submit to the Rhode Island General Assembly.

With financial support provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, can now hire a consultant to assist in updating the initial state-five-year plan approved by the Rhode Island General Assembly in 2013. Once the updated report is completed and approved by the Rhode Island General Assembly, the Executive Board can will seek legislative and regulatory changes to carry out its recommendations to ensure that it is more than just a document—that it comes to shape the state’s public policies on Alzheimer’s.

“Rhode Island has been a national leader in Alzheimer’s research. Each day, we make great strides in expanding clinical trials and innovating treatments. Over the last few years alone, the local landscape of prevention and treatment has changed dramatically and positively. The updated State Plan will be an invaluable tool for local leaders, researchers, physicians, advocates and families as we work together to build momentum in the fight against Alzheimer’s,” said Lt. Governor McKee.

“A Living Document”

“We face an emerging crisis with the prevalence of Alzheimer’s disease projected to increase to as many as 27,000 Rhode Islanders by 2025. Alzheimer’s disease is a pivotal public health issue that Rhode Island’s policymakers cannot ignore. With the rapidly growing and changing extent of the Alzheimer’s crisis, it is essential that Rhode Island’s State Plan becomes a living document that stakeholders regularly consult and re-evaluate,” says Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter.

“Communities have greater interest in age-friendly initiatives. There’s a growing understanding of the critical role older people play. They are an asset to community, and their voices and insights are invaluable to the public discourse on what communities need,” said Nora Moreno Cargie, vice president, corporate citizenship for Tufts Health Plan and president of its Foundation.

“A coordinated, strategic approach to Alzheimer’s will lead to better outcomes and healthier lives. Working with generous donors, we’re proud to partner with Tufts to fund this crucial work,” said Jenny Pereira, the Rhode Island Foundation’s vice president of grant programs.

Put Older Woman, Older Veterans on the Radar Screen

The updated state plan must address the growing needs of older woman and the state’s aging veterans population.

Maureen Maigret, Vice Chair of the Long Term Care Coordinating Council and Chair of its Aging in Community Subcommittee, suggests zero in on the special needs of older woman. “Alzheimer’s disease and related dementias is of special concern for older women as the they are more likely to suffer from the debilitating disease due to greater longevity, more likely to need long term care services and supports and are more often than men to be caregivers either unpaid or paid of persons with Alzheimer’s disease. The Aging in Community Subcommittee of the LTCCC has several pieces of legislation to strengthen support for caregivers and to enhance home and community based services,” says Maigret.

Last year, the USAgainstAlzheimer’s, (UsA2), released the issue brief, “Veterans and Alzheimer’s Meeting the Crisis Head on,” with data indicating that many older veterans will face a unique risk factor for Alzheimer’s as a direct result of their military career.

“Forty nine percent of those aging veterans age 65 ((WW2, Korea, Vietnam and even younger veterans, from the Iraq and Afghanistan conflicts in the coming decades), are at greater risk for Alzheimer’s compared to 15 percent of nonveterans over age 65,” say the authors of the issue brief.

UsA2’s issue brief pulled together research findings released by the U.S. Department of Veteran’s Affairs (VA). On study estimates that more than 750,000 older veterans have Alzheimer’s disease and other dementias, another noting that the number of enrollee with Alzheimer’s grew 166 percent from roughly 145,000 in 2004 to 385,000 in 2014.

The minority communities are at even greater risk for Alzheimer’s and minority veterans are predicted to increase from 23.2 percent of the total veteran population in 2017 to 32.8 percent in 2037, says a cited VA study.

The issue brief also cited one study findings that indicated that older veterans who have suffered a traumatic brain injury (TBI) are 60 percent are more likely to develop dementia, Twenty-two percent of all combat wounds in Afghanistan and Iraq were brain injuries, nearly double the rate seen during Vietnam – increasing these younger veterans’ lifetime Alzheimer’s risk.

The Rhode Island Foundation and the Tufts Health Plan Foundation grant funding was key to the Lt. Governor McKee being able to update its state’s plan to battle Alzheimer’s disease. It provides state policy makers with a roadmap o effectively utilize state resources and dollars to provide care for those afflicted with debilitating cognitive disorder. It is money well spent.

The Alzheimer’s Association will shortly issue a Request for Proposal (RFP) seeking a research consultant to assist in revising and updating e the State Plan. For details about the RFP of the State’s Alzheimer’s Plan, email Michelle La France at mlafrance@alz.org.

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.

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Congress Passes RAISE Family Care Givers Act

Published in the Woonsocket Call on January 14, 2018

With the dust finally settling after the heated partisan battles over the dismantling President Obama’s landmark Obamacare and later reforming the nation’s tax code, Congressional Democrats and Republicans put political and philosophical differences aside to overwhelming pass by voice vote the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.

The RAISE Family Caregivers Act of 2017, introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), was passed on January 8, 2017. Two months earlier a House companion measure (H.R. 3759), introduced by Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL), was passed. At press time, the legislation now heads to the President’s desk to be signed into law.

The caregiver legislation would direct the U.S. Secretary of Health and Human Services to develop and sustain a strategy to recognize and support family caregivers across the nation. This bipartisan legislation has been endorsed by more than 60 aging and disability organizations, including AARP, the Alzheimer’s Association, the National Committee to Preserve Social Security and Medicare, the Elizabeth Dole Foundation, the Michael J. Fox Foundation, and the Arc.

Universal Praise for Congressional Passage

Congress clearly understands that caregiving is not a partisan issue but a life experience for millions of Americans.Yes, everyone at some time in their life may take on the role of caregiver for parents, spouses, children and adults with disabilities, or personally know caregivers.

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 caregiver 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.

“Family caregivers play an essential role in our communities by dedicating time and attention and making countless personal and financial sacrifices to care for their loved ones,” said Sen. Collins upon the Senate bills passage. “I am delighted that our bipartisan legislation to develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers will now become law,” adds the Maine Senator, who chairs the Senate Special Committee on Aging.

Senator Sheldon Whitehouse sees the value of the RAISE Family Caregivers and its impact to Rhode Island caregivers. “The passage of the bipartisan RAISE Family Caregivers Act is an important first step toward easing the burden on the caregivers who mean the world to the family members they care for.” says the Rhode Island Senator who serves on the Senate Special Committee on Aging.

“Family caregivers play a key role in supporting their loved ones in Rhode Island and throughout the nation. adds Democratic Policy and Communications Committee Co-Chair David N. Cicilline. “The RAISE Family Caregivers Act ensures that family caregivers have the support and the resources they need to do their jobs safely and effectively. As a co-sponsor of H.R. 3759, I made sure my colleagues understood that this bill needed to become law as soon as possible, and I am glad that it passed both Chambers without objection. Now I urge President Trump to sign it and allow this important law to take effect”

“Thanks to the efforts of bipartisan Senate and House champions—Senators Collins and Baldwin and Representatives Harper and Castor—the RAISE Family Caregivers Act will help address the challenges family caregivers face,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond, in a statement. “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” she says.

According to LeaMond, family caregivers take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. She estimates that the unpaid care that family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.

What’s in the RAISE Family Caregiver Act?

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 (meetings open to the public) 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 development of the initial strategy would take up to 18 months, followed by updates of the strategy biennially. The bill would improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving; better coordinate, assess, maximize the effectiveness, and avoid unnecessary duplication of existing federal government activities to recognize and support family caregivers. The strategy and work around it could help support and inform state and local efforts to support family caregivers, promoting greater adoption of person- and family-centered care in all health and Long-Term Service and Support (LTSS) settings, with the person and the family caregiver (as appropriate) at the center of care teams

In addition to requiring the development of a strategy to support the nation’s family caregivers, the bill also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.

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.

Calls for More Caregiver Assistance

“In Rhode Island, we’re working hard at staying ahead on legislation supporting caregivers,” said AARP Rhode Island State Director Kathleen Connell. “We passed temporary caregiver insurance, which covers thousands of working caregivers with salary protection much like TDI (Temporary Disability Insurance). Earned-paid sick leave fills in a gap that caregiver TDI may not cover in emergency situations. The AARP-back CARE Act now requires hospitals, upon admitting patients, identify a designated caregiver, inform that person on discharge and provide training for at-home medical tasks. We have passed legislation making it easier for caregivers to modify their homes. And just this month, the state opened applications for a grant program we fought for in the current budget that provides up to $5,000 in hard cash for caregivers who make qualifying home improvements.” (Download a grant application at http://www.aarp.org/ricaregiving)

“We cannot stop here,” added Connell. “And the RAISE Act keeps the need for ongoing strategic planning and smart policymaking on the front burner. The numbers demand escalating action that will improve conditions not just for people who need care, but their family caregivers as well. But it is very important to emphasize that all taxpayers benefit when someone with chronic illness or aging disabilities can stay in their homes, rather than move into Medicaid-supported nursing homes. We all win when we support caregivers.”

NOTE: “The Rhode Island Chapter of the Alzheimer’s Association has a commitment to assisting caregivers navigate the various challenges of caring for someone living with Alzheimer’s and other related dementias,” says Donna McGowan, Executive Director of the Alzheimer’s Association, RI Chapter. Call 1-800-272-3900 for details about caregiver and provider services (including confidential support, information, and referrals to local resources via access to a 24/7 Helpline, care consultation, caregiver support groups, education programs for families, and online information (www.alz.org/ri ).

The Growing Incidence of Alzheimer’s

Published in Pawtucket Times on April 26, 2016

While Congress and states are nation grappling with how to put the brakes to one of the largest public health crises in recent times, the escalating Alzheimer’s disease (AD) epidemic, the Chicago-based Alzheimer’s Association releases its annual snap shot detailing statistics on the impact of Alzheimer’s and dementia on caregivers and health care costs..

According to the 2016 Alzheimer’s disease Facts and Figures, released on March 30, 2016, this year nearly 16 million Alzheimer’s caregivers will provide 18 billion hours of unpaid care to 5.4 million afflicted with this devastating disorder. That care had an estimated value of $221.3 billion, says the report.

But that’s not all, this recently released report notes that two out of three people believe that Medicare will help them over costly nursing facility costs. Sorry it won’t. AD also has a direct impact on a caregiver’s pocketbook, too, the researchers found. More than one-third of those surveyed say they were forced by caregiving duties to reduce their hours at work or just quit their job entirely. As a result of these actions their income dropped by $15,000 compared to the previous year. Eleven percent of caregivers were forced to cut back on spending for their children’s education in order to provide support.

The 79 page Alzheimer’s Association report notes that both physical, emotional and financial support required by a person with AD may ultimately deprive family and friend care givers basic necessities, such as food, transportation and medical care. The Facts and Figures report reveals that these caregivers were 28 percent more likely to eat less or go hungry while contributing care to someone with AD, and one-fifth even sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of the caregivers say they cut back on their own expenses to afford dementia-related care for their family member or friend.

“The devastating emotional and physical effects of caring for a person with Alzheimer’s disease has been well-studied,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “However, this new report shows, for the first time, the enormous personal financial sacrifices that millions of care contributors must make every day. These sacrifices jeopardize the financial security of individuals and families, as well as their access to basic needs and health care.”

This year’s Facts and Figures report found that 13 percent of family or friend caregivers sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, caregivers, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with AD; however, amounts varied with many spending tens of thousands of dollars per year.
Incidents of AD is Fast Growing

The Facts and Figures report says that out of the 5.4 million (of all ages) afflicted with AD, an estimated 5.2 million are age 65 and over. Yes, one in nine people having the cognitive disorder. Approximately 200,000, having early onset AD, are under age 65.

Also, the recently released Facts and Figures report warns that we are truly in the midst of an AD epidemic as the baby boomers grow older. By 2050, researchers say that someone in the United States will develop AD every 33 seconds. Without a medical breakthroughs to prevent or cure, the age 65 and over population with AD, the incidence is expected to nearly triple, from 5.2 million to a projected 13.8 million. Some say may be even as high as 16 million. It’s the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. .

Additionally, this year’s Facts and Figure report notes that AD is officially listed as the sixth-leading cause of death in this country. It is the fifth-leading cause of death for people age 65 and older. With the graying of America, AD will become a more common cause of death. At age 70, 61 percent of those with AD are expected to die before the age of 80 compared with 30 percent of people without the cognitive disorder — a rate twice as high, says the report.

The Typical Care Giver

The Facts and Figures report puts the face on a typical caregiver. Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older. Forty one percent have a household income of $50,000 or less.

AD takes a devastating toll on the health of caregivers, says the Facts and Figures report. Nearly 60 percent of those taking care of loved ones with Alzheimer’s and dementia report that their emotional stress being high or very high. About 40 percent suffer from depression. One in five care givers cut back on their own physician visits because of their caregiving responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.

A Huge Cost on the Health Care System

The report’s researchers warn that the AD epidemic might just bankrupt the nation’s Medicare program. In 2016, total payments for health care, long-term care and hospice are estimated to be $236 billion for people with Alzheimer’s and other dementias, with just under half of the costs paid by Medicare. Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars

Medicare and Medicaid are expected to cover $160 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.

Seeing a huge rise in AD over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

A Call to Action

Yes, the AD epidemic is here, right in Rhode Island. Everyone is personally touched by either caring for a family member with the cognitive disorder or knows someone who is a caregiver or afflicted.

Following the efforts of Congress to create a national strategic plan to address the rapidly escalating AD crisis and to coordinate resources across federal agencies, the Rhode Island General Assembly passed a joint resolution enacted into law to direct the Lt. Governor’s Long Term Care Coordinating Council (LTCCC) to be the vehicle to develop a state plan to address this growing public health crisis in the Ocean State. Ultimately, for over a year former Lt. Governor Elizabeth Roberts along with LTCCC members, former Division of Elderly Affairs Director Catherine Taylor, the state Chapter of the Alzheimer’s Association, universities and health care organizations with the public input gleaned from 8 listening events hammered out the 122 page battle plan with over 30 pages of recommendations.

In 2016, Lt. Governor Daniel J. McKee has picked up the ball and convened a meeting of the Executive Board on Alzheimer’s Disease and Related Disorders, consisting of researchers, advocates, clinicians and caregivers, to begin efforts to implement recommendations from the State’s Alzheimer’s Plan. The group will determine which recommendations are outdated.

With a rising population of Rhode Islander’s with AD, state policy makers must act swiftly and lose no more time in addressing this terrible disease and public health issue.