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.

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Senate Spending Bill Increases Research Dollars to Combat Alzheimer’s disease

Published in the Woonsocket Call on August 26, 2018

Last Wednesday evening, the US Senate overcame political gridlock by passing a 2019 fiscal “Minibus” spending bill that allocates funding for the Department of Defense; and Labor, Health and Human Services, Education, and Related Agencies (accounting for 65 percent of all discretionary spending). Within the Health and Human Services appropriation, the National Institutes of Health’s budget increased by $2 billion to $39.1 billion, a 5.4 percent increase over the agency’s current funding level.

The Labor, Health & Human Services, Education and Related Agencies Appropriations bill passed on Augusts 23 by a broad bipartisan vote of 85 to 7, the spending bill combining the Senate Appropriations Committee-passed FY 2019 Labor-HHS spending bill (S. 3158) with the text of the Senate committee-passed Defense spending bill (S. 3159). The Senate-passed appropriations bill, with both Rhode Island Senators supporting, adds an additional $425 million for Alzheimer’s research at the National Institutes of Health (NIH) for a total of $2.3 billion. The increases in Alzheimer’s funding surpasses the $2 billion research goal of the National Plan to Address Alzheimer’s Disease. If signed into law, this would mark the fourth consecutive year of historic action by the U.S. Congress to address the growing Alzheimer’s epidemic through funding research.

As to other NIH health initiatives, the 2019 fiscal spending bill also allocated $429.4 million for the BRAIN initiative to map the human brain, (a $29 million increase), and $376 million for the All of Us precision medicine study, this was $86 million more than in FY 2018.

The Senate Labor, Health and Services, and Education appropriations subcommittee first recommended the Alzheimer’s funding increases in June, with the full Senate appropriations committee later giving its support.

Bipartisan Support for Combating Alzheimer’s Disease

Ahead of the Senate floor vote, U.S. Senator Roy Blunt (Mo.), chairman of the Appropriations Subcommittee on Labor-HHS, called for increased federal dollars to invest in research to find a prevention and cure for Alzheimer’s disease. “Treating those with Alzheimer’s costs taxpayers $21 million every hour and, without a treatment or cure, will top $1.1 trillion by 2050 – about twice as much as the annual defense budget,” the Senator calculated.

Blunt warned his Senate colleagues that the nation must get serious with confronting the Alzheimer’s epidemic and finding a cure through research. The Senator stated: “Every hour, Alzheimer’s disease costs taxpayers at least $21 million. Every single hour. Someone in the United States is developing Alzheimer’s every 65 seconds,” noting that $277 billion in tax dollars are spent a year on Alzheimer’s and dementia-related care. It’s hard to talk about this without giving numbers, but numbers are not the most riveting thing, particularly when you talk about millions, or billions, or even trillions.

“What does that really mean? That really means that we’re spending basically an amount equal to half of the defense budget on Alzheimer’s and dementia-related care. Just the overwhelming impact of that, if we don’t do something differently than we’re doing right now, just because of the projected long life and demographics of the country, in 2050, which is 32 years from now, we’ll be spending, in today’s dollars, $1.1 trillion on Alzheimer’s and dementia care. $ 1.1 trillion… That’s twice the defense budget of last year, twice the defense budget. …,” says Blunt

“If we could just delay onset of Alzheimer’s, if we could figure out how to come up with something that would slow down the onset of that disease. If we could delay onset by an average of five years, we’d cut that $1.1 trillion by 42 percent, almost in half. If we could have the average person that gets Alzheimer’s, get it five years later than they are getting Alzheimer’s today, almost half, 42 percent of that $1.1 trillion would go away,” said Blunt.

Greater Investment in Alzheimer’s Funding Still Needed

With the Senate appropriations bill pumping more federal dollars into Alzheimer’s research, UsAgainstAlzheimer’s Chairman George Vradenburg issued a statement
saying: “We believe that Alzheimer’s is the second inconvenient truth of the 21st century. Alzheimer’s is the century’s most fearsome — and inevitable — health and social economic threat to the baby boom and future generations, including, in particular, to women and communities of color. Even with this strong commitment from the Senate, greater investment is still needed if we are to deliver meaningful progress in care and treatment to the six million Americans, 50 million globally, living with this disease and their more than 16 million caregivers. In addition to supporting research, we must elevate brain health as an important part of the path to a cure through regular primary care physician assessments of cognitive health — and early and accurate diagnosis of the cause of any cognitive impairment. The Concentrating on High-value Alzheimer’s Needs to Get to an End (CHANGE) Act, comprehensive legislation aimed at overcoming barriers to a faster cure for Alzheimer’s disease, does just that and we urge Congress to pass the CHANGE Act immediately.”

The Chicago-based Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) also applauded the Senate’s 2019 spending bill that puts more money into Alzheimer’s research. “Every 65 seconds someone in the U.S. develops the disease,” said Harry Johns, Alzheimer’s Association and Alzheimer’s Impact Movement (AIM) President and CEO. “But, thanks to increased NIH funding American scientists are now advancing basic disease knowledge, ways to reduce risk, new biomarkers for early diagnosis and drug targeting, and developing the needed treatments to move to clinical testing,” he says.

The Senate appropriations bill now goes to conference negotiations with the House and must be signed into law by President Donald Trump. The 2019 Fiscal Year begins October. 1.

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.

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.