Splaine Consulting Gears Up to Update State’s Alzheimer’s Plan

Published in Woonsocket Call on July 8, 2018

With the securing of a total of $30,000 in grants, Lt. Governor Dan McKee officially begins Rhode Island’s effort to update its state’s five-year plan on Alzheimer’s Disease and Related Disorders to combat the rapidly increasing incidence of Alzheimer’s disease.

When announcing the successful fundraising effort, McKee noted that Rhode Island has been in the forefront of 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 the momentum in the fight against Alzheimer’s,” he said.

That day, Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter, warned “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. We will continue to work diligently to ensure that the vision of our state’s Alzheimer’s Disease Plan is translated into actual public policy.”

Consultants Bring Content Expertise to Project

With two $15,000 grants provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, released a request for proposal (RFP) for a consultant who would bring writing skills, expertise in public policy initiatives to provide programs and services to persons with Alzheimer’s disease, to the project.

Five consultants responded to the RFP and after a month long-search and a series of interviews, Michael Splaine and Kate Gordon, of Splaine Consulting, a small advocacy and government affairs consulting firm based in Columbia, Maryland, got the contract. No question, Splaine and Gordon brought the right blend of skills to the project. The consultants have provided content matter expertise to over two dozen State Alzheimer’s Plans.

Immediately prior to starting this company eight years ago, Splaine served as Director of State Government Affairs in the Public Policy Division of the Alzheimer’s Association for over 23 years, leading its grassroots network to accomplish state policy priorities, including persuading states to develop comprehensive state Alzheimer Plans in 2007-2008.

While at the Association he was a staff team member for the Association’s Early Stage Initiative (a program working to promote inclusion and programs for persons with Alzheimer’s.) and provided leadership in the Association on the government affairs aspects of the Healthy Brain Initiative, a cooperative agreement with the U.S. Centers for Disease Control, and Prevention continues this work as a consultant to the Association.

Kate Gordon, who has worked with Splaine for over 18 years, has a reputation for being a skilled health policy analyst and grassroots advocacy strategist. She brings expertise in a diverse range of health and long-term care issues topics, including federal and state policies affecting persons with dementia, caregiver interventions, and direct care worker training. Her previous work includes assisting in the development of the first United States National Alzheimer’s Plan and 18 state government Alzheimer’s disease plans.

Gordon was also awarded the prestigious 2013 HHSinnovates People’s Choice and Secretary’s Choice award winner for “Connecting to Combat Alzheimer’s.”

“Kate and I have worked with every level of government from local to global that is taking on the challenge of Alzheimer’s disease, including regionally and globally with the World Health Organization,” explains Splaine. The company’s long listing of clients includes the Alzheimer’s Association in their public health work with Center for Disease Control and Prevention (CDC), Alzheimer’s Disease International, the umbrella organization for over 90 national organizations devoted to persons with dementia, and overtime Splaine Consulting has also worked with the national center on elder abuse, Consumer Voice, Arthritis Foundation to name just a few.

The path that led Splaine Consulting to being chosen to update Rhode Island’s Alzheimer’s Plan may seem ironic to some, says Splaine, because it has most certainly brought him back home. He started his early professional life in the Ocean State, graduating Rhode Island College with a gerontology certificate, even having been married to a native Bristol resident for 41 years.

“My earliest work with people with cognitive impairment included volunteer teaching for Fr. (now Msgr.) Gerry Sabourin who was developing what was then called a special religious ed program and my field placement for Rhode Island College at two different adult day care centers,” says Splaine.

“I am thrilled to welcome Splaine Consulting to our team as we relaunch Rhode Island’s coordinated effort to fight Alzheimer’s disease and provide patients with the highest level of support and care,” said McKee. “Rhode Island is a leader in Alzheimer’s research and treatment but knowing how other states are addressing this devastating disease is essential to our success. Splaine’s experience in crafting other State Plans and their thorough understanding of the national landscape make Michael and Kate valuable partners.”

Combatting the Alzheimer’s Epidemic

The update of the State’s initial five-year Alzheimer’s Plan approved by the Rhode Island General Assembly in 2013, is 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. The final plan will provide state lawmakers, municipalities and the state’s health care system with a policy strategy to confront the anticipated Alzheimer’s epidemic. It will also take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and most importantly, details the steps the state must take (legislatively and regulatory) to improve programs and services for people with Alzheimer’s and their family caregivers.

Once the updated report is completed and approved by the Rhode Island General Assembly, the state’s Long-Term Care Coordinating Council’s Executive Board 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.

The updated report must be completed by October 31, after which there will be a follow up survey to all stakeholders in the process to see “how we did at capturing their ideas,” says Splaine.

Now, Splaine and Gordon begin their analytical review work of reviewing the existing Alzheimer’s Disease Plan, contacting key state agencies for their input, and planning formal interviews over the next 6 weeks with key persons from care, research, academia, and persons with dementia and family caregivers.

Community input is crucial, says Splaine. “Through the Long-Term Care Coordinating Council’s Executive Board under the leadership of the Lt. Governor, caregiver subcommittee we have a survey out [to solicit comments] that will stay open through the end of August that will be available online and offline, he says. Kicking off on August 5 and concluding August 10, 18 community town meetings are scheduled to allow Rhode Islanders to give their thoughts as to what should be included in the updated State Alzheimer’s Plan.

For a schedule of community town meetings visit, ltgov.ri.gov/alz.

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New Report Says Alzheimer’s Disease Is Now Major Public Health Issue

Published in the Woonsocket Call on March 25, 2018

For the second consecutive year, total payments to care for individuals with Alzheimer’s or other dementias will surpass $277 billion, which includes an increase of nearly $20 billion from last year, according to data reported in the Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report recently released last Tuesday.

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system.

“This year’s report illuminates the growing cost and impact of Alzheimer’s on the nation’s health care system, and also points to the growing financial, physical and emotional toll on families facing this disease,” said Keith Fargo, Ph.D., director of scientific programs and outreach for the Alzheimer’s Association, in a statement. “Soaring prevalence, rising mortality rates and lack of an effective treatment all lead to enormous costs to society. Alzheimer’s is a burden that’s only going to get worse. We must continue to attack Alzheimer’s through a multidimensional approach that advances research while also improving support for people with the disease and their caregivers,” he said.

Adds Fargo, “Discoveries in science mean fewer people are dying at an early age from heart disease, cancer and other diseases,” said Fargo. “Similar scientific breakthroughs are needed for Alzheimer’s disease, and will only be achieved by making it a national health care priority and increasing funding for research that can one day lead to early detection, better treatments and ultimately a cure.”

2018 Alzheimer’s Facts and Figures

New findings from the 88-page report on March 20, 2017 reveal the growing burden on 16.3 million caregivers providing 18.4 billion hours of care valued at over $ 232 billion to 5.7 million people with the devastating mental disorder. By 2050, the report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care skyrocketing to more than $1.1 trillion.

Between 2000 and 2015 deaths from health disease nationwide decreased by 11 percent but deaths from Alzheimer’s disease have increased by 123 percent, says the new data in the report, noting that one out of three seniors dies with Alzheimer’s or another dementia. It even kills more than breast cancer and prostate cancer combined. In Rhode Island in 2015, the number of deaths from Alzheimer’s disease was 453, making the devastating brain disorder the 5th leading cause of death in the state.

In 2017, 53,000 Rhode Island caregivers provided an estimated 61 million hours of unpaid physical and emotional care and financial support – a contribution to the nation valued at $768 million dollars. The difficulties associated with providing this level of care are estimated to have resulted in $45 million in additional healthcare costs for Alzheimer’s and other dementia caregivers in 2017.

State Updates Battle Plan Against Alzheimer’s Disease

“The Alzheimer’s Association’s most recent report about Alzheimer’s Disease in Rhode Island illustrates the need to take swift action in updating our State Plan to ensure Rhode Island is prepared to provide the necessary resources to families, caregivers and patients who are struggling with the disease,” says Lt. Governor McKee,

McKee adds that the updated State Plan will be a blueprint for how Rhode Island will continue to address the growing Alzheimer’s crisis. “It will create the infrastructure necessary to build programs and services for the growing number of Rhode Islanders with the disease. The updated Plan will also outline steps the state must take to improve services for people with Alzheimer’s and their families. After the update is complete, my Alzheimer’s Executive Board will seek legislative and regulatory changes to carry out the recommendations of the Plan and ensure that it is more than just a document,” he says.

“One of the many types of caregivers benefiting from AARP’s caregiving advocacy in Rhode Island are family members who care for those with Alzheimer’s,” said AARP Rhode Island State Director Kathleen Connell. “They are among the army of 10 million wives, husbands, sons and daughters nationwide. The majority are women and according to researchers, especially when it comes to dementia and Alzheimer’s care. Approximately 40 percent of those caregivers say they have no other options or choices, and a third say they provide care 24/7.

“The latest report indicates what we already know,” Connell added. “This will continue to be rising challenge in Rhode Island as our population ages. The disease will place more stress on our Medicaid-funded nursing home capacity, which should make this a concern for taxpayers. There is a strong case for increasing research funding so that someday we may reverse the tide.

“Our Web site, http://www.aarp.org, provides abundant resources for these dedicated caregivers. AARP in states across the nation, including Rhode Island, have worked to pass legislation that provides paid respite for caregivers who have jobs as well as caregiving obligations. We have supported the Alzheimer’s Association here in Rhode Island for many years and, last year, a small team of AARP volunteers participated in the Alzheimer’s Walk. Joined by others, they are gearing up for this year’s walk.”

Increased Research Funding Needed Now

Donna McGowan, Alzheimer’s Association, RI Chapter Executive Director, says that the 2018 Alzheimer’s Disease Facts and Figures report should send a very clear message that Alzheimer’s disease is an issue that policy makers cannot ignore. “This is an urgent public health crisis that must be addressed. Early detection and diagnosis of the disease leads to better planning, avoiding preventable hospitalizations, and over all a better quality of life for the patient and the caregiver,” says McGowan.

McGowan warns that the health care system is not ready to handle the increased cost and number of individuals expected to develop Alzheimer’s disease in the coming years. “With a vigorous National Plan in place to address the Alzheimer’s crisis, and annual budget guidance for Congress, it is essential that the federal government continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research,” adds McGowan.

Rhode Island Congressman David Cicilline sees the need for increased funding for direct services for those afflicted with Alzheimer’s disease. He voted for H.R.1625, the omnibus spending bill that increases funding for the National Institute of Health’s Alzheimer’s research by $414 million. And two years ago, Cicilline worked to pass H.R.1559, “The HOPE for Alzheimer’s Act,” which President Obama signed into law to expand Medicare coverage for Alzheimer’s treatment.

If Cicilline succeeds to get the Republican-controlled Congress to have a vote on H.Res.160, his bill to reestablish the House Select Committee on Aging, it will allow House lawmakers to hear expert testimony and make new policy recommendations to improve the delivery of care to those afflicted with Alzheimer’s and to assist caregivers, too.

For details, go to http://www.alz.org/facts.

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.

Does Exercise Aid Brain Health?

The Debate’s Yet to be Decided

Published in Woonsocket Call on August 31, 2016

According to AARP’s latest health aging survey findings, age 40 and over respondents who regularly exercise rate their brain health significantly higher than non-exercisers. They also cite improvements in their memory, ability to: learn new things, managing stress, and even making decisions. On the other hand, the findings reveal an overwhelming majority of these respondents see the benefits of exercise, but only 34 percent are meeting the Global Council on Brain Health’s (GCBH) recommended 150 minutes of moderate to vigorous exercise per week.

These findings in the 37 page Survey on Physical Activity report, conducted by GfK for AARP, directly align with AARP’s Staying Sharp program, a digital platform that promotes brain health though holistic advice supported by science.

“With Staying Sharp, we sought to empower consumers with the tools needed to create a holistically brain healthy environment for themselves—along with a way to track and measure their progress,” said Craig Fontenot, VP of Value Creation. “The results of this survey only further validate the advice suggested on the platform and give us confidence that we’re providing our members with helpful, impactful information.”

The AARP survey findings, released on July 26, found that more than half (56 percent) of the age 40 and over respondents say that they get some form of exercise each week. However, only about a third (34 percent) of these individuals actually achieve the recommended 2 ½ hours of moderate to vigorous activity each week. There was little difference in reported amounts of exercise by age or gender.

The AARP online survey, with a represented sample of 1,530 Americans age 40 and over, found that walking is the most common form of physical exercise reported with 53 percent of the age 40 and respondents saying that they walk for exercise. A smaller percentage is engaging in more vigorous activity such as strength training/weight training (15 percent) or running/jogging (8 percent).

According to the survey’s findings, most of the age 40 and over respondents see the benefits to engaging in physical activity and do not find it particularly unpleasant or difficult. For example, three quarters believe exercise would improve their health, physical fitness, and quality of life.

Having willpower, enjoying exercise, identification as an “exerciser,” lack of enjoyment and feeling like you have the energy to exercise or lack money to exercise are the key factors that differentiate exercisers from non-exercisers, the researchers say.

The study found that the largest share of non-exercisers are “contemplators” in that they see the benefits and are considering taking up exercise (34 percent). About one-quarter (24 percent) are considered “non-believers” and see no need for exercise and were satisfied being sedentary. However, two in ten (19 percent) are “preparers” and say they have a firm plan to begin exercising in the near future.

Finally, the most common leisure activity that age 40 and over respondents would give up if they were to engage in exercise is watching TV/streaming movies (65%).

Removing the Barriers to Exercise

Colin Milner, CEO at the Vancouver, BC-based International Council on Active Aging, says, “These findings demonstrates the amazing and ongoing benefits of regular exercise. Our challenge, to get more people to actually move. By doing so the country and millions of individuals would improve their physical and mental health,” he notes.

Adds Milner, “The most important thing is to remember is that our bodies and brains were meant to be used. If we fail to do so they will cease to perform at the level we need or desire, and that is detrimental to our overall health and well-being.”

“Part of our challenge [to not exercising] is to remove the barriers that prevent us from leading an engaged life. A recommendation would be to list out the reasons you are not exercising or eating well, why you are feeling stressed or are not socially engaged, then set out to replace these with reasons to exercise and eat well, to be stress free and socially engaged. Once you have done this consider what steps you need to take to make this a reality,” he says. ICAA’s Webpage, “Welcome Back to Fitness” (http://icaa.cc/welcomeback.htm) gives the basics to help people begin exercising.

An avid squash player, Richard W. Besdine, MD, Professor of Medicine and Brown University’s Director, Division of Geriatrics and Palliative Medicine, preaches the importance of physical activity to all his colleagues and friends. “There are a large number of research studies documenting that exercise is good for all organs in your body,” he says, adding that that regular exercise can also reduce cancer rates, control diabetes, improve one’s emotional health and even reduce depression.

When asked about AARP’s survey findings about the impact of exercise and brain health, Besdine says he applauds the survey’s objectives of examining the relationship between physical exercise and brain health, but its findings are self-reported at best, not empirically derived.

Besdine points out that there is a growing body of studies that empirically study the relationship between exercise and brain health and findings indicate a positive impact on brain functioning. People who exercise are less likely to be cognitively impaired and those who are mildly impaired may even slow or stop the progression of their mental disorder, he says.

“Although AARP’s survey is very interesting it is very limited because it is self-report and cross-sectional, says Deborah Blacker, MD, ScD, Director of the Gerontology Research Unit at Massachusetts General Hospital who is also a Professor of Psychiatry at Harvard Medical School.

AlzRisk, part of the AlzForum, a website that reports the latest scientific findings on the advancement of diagnostics and treatments for Alzheimer’s disease, posts a scientific review of 16 scientific articles reporting on the relationship of exercise habits to the later development of Alzheimer’s disease. Blacker, AlzRisk’s leader, says that this more solid body of evidence suggests that exercise may play a modest role in protecting a person from Alzheimer’s disease, but further scientific research is required.

Like Besdine, Blacker still sees the positive benefits of exercise even if the scientific data is still coming in. “We know that physical exercise is good for preventing cardiovascular disease and diabetes. If it may also help to prevent cognitive decline, for me that is an even better reason to exercise,” she says.

The Bottom Line

“Staying physically active is one of the best things that someone can do for their physical health and mental health. Physical activity can help you lose weight, lower your blood pressure, prevent depression, and, especially for older adults, promote memory and help you think clearly,” said Nicole Alexander-Scott, MD, MPH, Director of the Rhode Island Department of Health. “We are working hard to make sure that people from every zip code throughout Rhode Island have access to our state’s wonderful parks, beaches, and other natural resources and are getting the amount of physical activity they need to live long, full, productive lives.”

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.

Report: Alzheimer’s Poses Greater Risk for Older Women than Men

Published in Pawtucket Times, May 11, 2014

According to the Alzheimer’s Association 2014 Alzheimer’s disease Facts and Figures report released last Month, a woman’s estimated lifetime risk of developing Alzheimer’s at age 65 is 1 in 6, compared with nearly 1 in 11 for a man. As real a concern as breast cancer is to women’s health, women age 60 and over are about twice as likely to develop Alzheimer’s over the rest of their lives as they are to develop breast cancer, says the this years’ report.

The Facts and Figures report, an official report of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The 75 page report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the detailed report has become the most cited source covering the broad spectrum of Alzheimer’s issues.

“Through our role in the development of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in 2010, in conjunction with Maria Shriver, we know that women are the epicenter of Alzheimer’s disease, representing majority of both people with the disease and Alzheimer’s caregivers. The recently released Alzheimer’s Association Facts and Figures examines the impact of this unbalanced burden,” said Angela Geiger, chief strategy officer of the Alzheimer’s Association. “Well-deserved investments in breast cancer and other leading causes of death such as heart disease, stroke and HIV/AIDS have resulted in substantial decreases in death. Geiger calls for comparable investments in research to reach the same levels of successfully preventing and treating Alzheimer’s as the other leading causes of death.

Adding to women’s Alzheimer’s burden, there are 2.5 times as many women as men providing intensive “on- duty” care 24 hours for someone living with Alzheimer’s disease, says the report, also noting that among caregivers who feel isolated, women are much more likely than men to link isolation with feeling depressed (17 percent of women verse. 2 percent of men).

Also noted in the 2014 Alzheimer’s’ Facts and Figures report released on March 19, 2014, the strain of caring for someone with Alzheimer’s is also felt in the nation’s workplace, too. Among caregivers who have been employed while they were also care giving, 20 percent of women verse. 3 percent of men went from working full-time to working part-time while acting as a caregiver. The report also noted that 18 percent of women versus. 11 percent of men took a leave of absence while 11 percent of women verses 5 percent of men gave up work entirely. Finally, 10 percent of women verse 5 percent of men lost job benefits.

Far Reaching Fiscal Human Impact of Alzheimer’s

Meanwhile the Alzheimer’s Association Facts and Figures report noted that there are more than 5 million Americans living with this devastating disorder, including 3.2 million women and 200,000 people under the age of 65 with younger-onset Alzheimer’s disease (see my May 9, 2013 Commentary). However, Alzheimer’s has far-reaching effects by impacting entire families. Also, it was reported that there are currently 15.5 million caregivers providing 17.7 billion hours of unpaid care throughout the nation, often severely impacting their own health. The physical and emotional impact of dementia care giving resulted in an estimated $9.3 billion in increased healthcare costs for Alzheimer’s caregivers in 2013.

The total national cost of caring for people with Alzheimer’s and other dementias is projected to reach $214 billion this year, says the 2014 Facts and Figures report, not including unpaid care giving by family and friends valued at more than $220 billion. In 2014, the cost to Medicare and Medicaid of caring for those with Alzheimer’s and other dementias will reach a combined $150 billion with Medicare spending nearly $1 in every $5 on people with Alzheimer’s or another dementia.

The Facts and Figures report predicts the cost numbers to soar as the baby boomers continue to enter the age of greatest risk for Alzheimer’s disease. Unless something is done to change the course of the devastating disorder, there could be as many as 16 million Americans living with Alzheimer’s in 2050, at a cost of $1.2 trillion (in current dollars) to the nation. This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending and a 400 percent increase in out-of-pocket spending.

The country’s first-ever National Plan to Address Alzheimer’s disease has a goal of preventing and effectively treating Alzheimer’s disease by 2025. Ensuring strong implementation of the National Alzheimer’s Plan, including adequately funding Alzheimer’s research, is the best way to avoid these staggering human and financial tolls.

Lack of Understanding of the Alzheimer’s’ Disease

“Despite being the nation’s biggest health threat, Alzheimer’s disease is still largely misunderstood. Everyone with a brain — male or female, family history or not — is at risk for Alzheimer’s,” said Geiger. “Age is the greatest risk factor for Alzheimer’s, and America is aging. As a nation, we must band together to protect our greatest asset, our brains.”

In 2010, the Alzheimer’s Association in partnership with Maria Shriver and The Shriver Report conducted a groundbreaking poll with the goal of exploring the compelling connection between Alzheimer’s disease and women. Data from that poll were published in The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which also included essays and reflections that gave personal perspectives to the poll’s numbers. For the first time, that report revealed not only the striking impact of the disease on individual lives, but also its especially strong effects on women — women living with the disease, as well as women who are caregivers, relatives, friends and loved ones of those directly affected.

Realizing the impact Alzheimer’s has on women — and the impact women can have when they work together — the Alzheimer’s Association is launching a national initiative this spring highlighting the power of women in the fight against this disease. To join the movement, visit http://www.alz.org/mybrain.

Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island and Coordinator of the Rhode Island Older Woman’s Policy Group, concurs with the findings of the Alzheimer’s disease Facts and Figures report. She calls for the education of elected officials on the facts about Alzheimer’s disease and its greater prevalence among women. “It is clearly a tragedy for the women effected with the disease, and can be devastating for their caregivers, mostly daughters, trying to keep them at home,” she says.

Maigret says that Alzheimer’s disease and other dementias at the state level have tremendous implications for this state’s budget. “Data show that in Rhode Island, about three-quarters of persons in nursing homes paid for by Medicaid are older women. An overwhelming number of them have some cognitive decline or dementia, she notes.

“We must do more to ensure that quality long-term care is available for persons with dementia and that robust caregiver support services are in place for the many families dealing with parents, spouses and other loved ones suffering from this disease,” says Maigret, stressing that government funding on research must also be greatly increased in the hopes of finding a cure or ways to prevent its onset.

Director Catherine Taylor, of the state’s Division of Elderly Affairs, believes that the Alzheimer’s’ Association’s released 2014 Facts and Figures report, about a woman’s lifetime risk of developing the devastating cognitive disorder verses breast cancer “really help us understand, in stark terms, what a public health crisis Alzheimer’s disease is, especially for women.”

Taylor notes that the Ocean State is in the implementation phase of its State Plan on Alzheimer’s disease and Related Dementias (see my November 13, 2013 commentary), where state officials are working to improve information, care and supports for every family that confronts Alzheimer’s disease. “The work will continue until there’s a cure,” she says.

“It’s important to note that new research findings also indicates that up to half of the cases of Alzheimer’s disease may be linked to risk factors “within our control,” states Taylor, adding that reducing the risk of developing Alzheimer’s disease may be a simple as eating a healthy diet, staying active, learning new skills, and maintaining maintain strong connections with family, friends and community.

For those concerned about their risk of developing Alzheimer’s disease, join Prevent AD, Rhode Island’s Alzheimer’s disease Prevention Registry. Prevent AD volunteers will learn about prevention studies for which they may be qualified to participate in, as well as the latest news on brain health. For more information, call (401) 444-0789.

The full text of the Alzheimer’s Association 2014 Facts and Figures can be viewed at http://www.alz.org/downloads/facts_figures_2014.pdf. The full report also appeared in the March 2014 issue of Alzheimer’s & Dementia: the Journal of the Alzheimer’s Association (Volume 10, Issue 2).

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

RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

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

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s Disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

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