AAIC 2019 Concludes, Researchers Share Findings to Combat Alzheimer’s disease

Published in the Woonsocket Call on July 20, 2019

Thousands of the world’s leading professionals, involved in dementia care and neuroscience research, came at the Los Angeles Convention Center from July 13 to July 18, 2019, to attend the Alzheimer’s Association International Conference® to learn about the findings of the latest Alzheimer’s disease clinical trial and a government-driven public/private initiative to speed them up.

AAIC® is considered to be the largest and most influential international meeting with a mission to advancing dementia research. Every year, AAIC® brings together the world’s leading basic science and clinical researchers, next-generation investigators, clinicians and the care research community, to share research findings that’ll lead to methods of preventing, treating, and improving the diagnosis of Alzheimer’s disease.

“It is clear, and has been for some years that the (Alzheimer’s) field needs to explore other options, and diversify the portfolio of targets. A renewed energy has been brought about by a fivefold increase in Alzheimer’s research funding at the federal level. These gains will propel already-established efforts by the National Institute on Aging, Alzheimer’s Association and others to diversify (therapeutic) targets,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer, in a July 17 statement publicizing research findings from the international conference.

Hundreds of Findings of Clinical Trials Shared

According to the Chicago-based Alzheimer’s Association, “a record number of scientific abstracts – more than 3,400 – were submitted to AAIC this year, including 229 abstracts with results from or descriptions of Alzheimer’s clinical trials. AAIC 2019 also spotlighted three clinical trials using innovative methods and targets.”

At AAIC 2019, attendees were updated about the activities of the Accelerating Medicine Partnership-Alzheimer’s Disease (AMP-AD), a partnership among government, industry, and nonprofit organizations (including the Alzheimer’s Association) that focuses on discovering, validating and accelerating new drug targets. The Alzheimer’s Association says that this $225 million research initiative is made possible through the highest-ever levels of U.S. federal funding for research on Alzheimer’s and other dementias, approved and allocated in the last five years.

“This is an example of how the government and private entities and researchers can work together [via AMP-AD funded studies] on providing the resources necessary to expand our abilities to test new drugs and find a treatment for Alzheimer’s disease, and, hopefully find a cure,” said Donna M. McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter. “Rhode Island has tremendous researchers, and they are at the forefront of this initiative. they need the tools to increase their scope of work.”

Adds Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer, “It is clear, and has been for some years that the field needs to explore other options, other avenues, and diversify the portfolio of targets. A renewed energy has been brought about by a fivefold increase in Alzheimer’s research funding at the federal level, achieved largely due to efforts by the Alzheimer’s Association, the Alzheimer’s Impact Movement, and our ferocious advocates. These gains will propel already-established efforts by the National Institute on Aging, Alzheimer’s Association and others to diversify the portfolio of drug targets for the scientific community.”

The achievements of the AMP-AD Target Discovery Project were highlighted in a series of presentations by the leading AMP-AD investigators at AAIC 2019.

One study noted for the first time, 18-month results from an open-label extension of inhaled insulin in Mild Cognitive Impairment and Alzheimer’s including significant benefits for memory ad thinking, day to day functioning, and biological markers of Alzheimer’s.

Another described a newly-initiated 48-week Phase 2/3 clinical trial of a drug targeting toxic proteins released in the brain by the bacterium, P. gingivalis, generally associated with degenerative gum disease. Previous research findings identified the bacterium in brains of more than 90 percent of people with Alzheimer’s across multiple studies and demonstrated that infection may trigger Alzheimer’s pathology in the brain.

Can lifestyle Interventions Promote Brain Health?

There was also an update on the Alzheimer’s Association U.S. Study to Protect Brain health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER) study, now up and running in multiple locations. The U.S. POINTER is a two-year clinical trial to evaluate whether intensive lifestyle interventions that target many risk factors for cognitive decline and dementia can protect cognitive function in older adults at increased risk for cognitive impairment and dementia. Researchers will compare the effects of two lifestyle interventions on brain health in older adults at risk for memory loss in the future. The U.S. POINTER is the first such study to be conducted in a large group of Americans across the United States.

The researchers say people age 60 to 79 will be randomly assigned to one of two lifestyle interventions. Both groups will be encouraged to include more physical and cognitive activity and a healthier diet into their lives and will receive regular monitoring of blood pressure and other health measurements. Participants in one intervention group will design a lifestyle program that best fits their own needs and schedules. Participants in the other intervention group will follow a specific program that includes weekly healthy lifestyle activities.

Laura Baker, Ph.D., associate professor of gerontology and geriatric medicine at Wake Forest School of Medicine, and one of the principal investigators of the U.S. POINTER study, said, “Lifestyle interventions focused on combining healthy diet, physical activity and social and intellectual challenges represent a promising therapeutic strategy to protect brain health.”

“U.S. POINTER provides an unprecedented opportunity to test whether intensive lifestyle modification can protect cognitive function in older Americans who are at increased risk of cognitive decline and dementia,” Baker added.

“We envision a future where we can treat and even prevent Alzheimer’s through a combination of brain-healthy lifestyle and targeted medicines, as we do now with heart disease,” Carrillo said. “We hope to prevent millions from dying with Alzheimer’s and reduce the terrible impact this disease has on families.”

For more details about research findings presented at AAIC 2019, http://www.alz.org/aaic

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

Published in the Woonsocket Call on May 12, 2019

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

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

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

Improving Supports for Those Afflicted with Alzheimer’s

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

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

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

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

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

Taking Bold Actions to Confront Alzheimer’s Epidemic

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

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

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

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

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

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

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

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

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

Alzheimer’s Impacts Almost Everyone

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

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

New Report Puts Spotlight on the Devastating impact of Alzheimer’s

Published by Woonsocket Call on March 10, 2019

It’s hot off the press. Last Tuesday, the Chicago-based Alzheimer’s Association announced the release of its long-awaited 2019 Alzheimer’s Disease Facts and Figures. The 90-page report is chock full of national and state specific statistics and again puts a spotlight on Alzheimer’s disease, often referred to as the nation’s silent epidemic. Every 65 seconds someone in the United States develops the devastating cognitive disorder. This year, an estimated 5.8 million Americans of all ages are living with Alzheimer’s and related dementia. This number includes an estimated 5.6 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.

Painting a Picture of Alzheimer’s Impact

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. For the third consecutive year, total payments to care for individuals with Alzheimer’s or other dementias is skyrocketing, say the report’s authors. In 2018, these costs were estimated to be over $ 277 billion. This year’s costs are expected to surpass $290 billion, an increase of nearly $13 billion from last year’s figure, according to data gleaned from the latest Facts and Figure report.

Yes, the 2019 Alzheimer’s Disease Facts and Figures report is a must read for congressional staff, state lawmakers, and federal and state officials.

New findings from the report released on March 5, 2019 reveal the growing burden on 16. million caregivers providing 18.5 billion hours of care valued at over $ 234 billion to 5.8 million people with cognitive disorders. By 2050, the new Alzheimer’s Association 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 reaching over $1.1 trillion.

Between 2000 and 2017, the number of deaths from Alzheimer’s disease as recorded on death certificates has more than doubled, increasing 145 percent, while the number of deaths from the number one cause of death (heart disease) decreased 9 percent, says the new data in the 2019 Facts and Figures report. Alzheimer’s disease kills more than breast cancer and prostate cancer combined.

The latest Alzheimer’s Disease Facts and Figures report notes that 83 percent of care provided to the nation’s older adults comes from unpaid caregivers. Specifically, about one in three caregivers (34 percent) is age 65 or older. Approximately two-third are woman. Over one-third of dementia caregivers are daughters, one quarter of these individuals also care for children under age 18. Most caregivers (66 percent) live with the person with dementia in the community.

Of the total lifetime cost of caring for persons with Alzheimer’s and other dementias, 70 percent of these expenses are borne by families, either by out-of-pocket or from the value of unpaid care,” says the Alzheimer’s report.

Taking a Look at Cognitive Assessments

Although the 2019 Alzheimer’s Disease Facts and Figures provides the latest national stats on Alzheimer’s prevalence, incidence, mortality, costs of care, and impact on caregivers, it also takes a close look at awareness, attitudes, and utilization of brief cognitive assessments (obtained by asking questions, observations, input from family and friends, or short verbal or written tests given in a clinical setting), among seniors age 65 and older and primary care physicians.

Although an evaluation of cognitive functioning is a required component of the Medicare Annual Wellness Visit, the report’s findings show that only 1 in 3 seniors are aware these visits should include this assessment.

“While it’s encouraging to see that the vast majority of seniors and physicians understand the value of brief cognitive assessments, we’re still seeing a significant gap in those that actually pursue, perform or discuss these assessments during routine exams,” said Joanne Pike, Dr.P.H., chief program officer for the Alzheimer’s Association in a statement released with this report. “Early detection of cognitive decline offers numerous medical, social, emotional, financial and planning benefits, but these can only be achieved by having a conversation with doctors about any thinking or memory concerns and through routine cognitive assessments.,” says Pike.

While the Alzheimer’s report noted that 82 percent of seniors and 94 percent of physicians believe it is important to have their thinking and memory checked, the findings indicated that just 16 percent of the senior respondents say they receive regular cognitive assessments for memory or thinking issues during routine health checkups, compared with blood pressure (91 percent), cholesterol (83 percent), vaccinations (80 percent), hearing or vision (73 percent), diabetes (66 percent) and cancer (61 percent).

The report’s authors also found a very “troubling disconnect” between seniors and their primary care physicians regarding who they believe is responsible for initiating these cognitive assessments and silence from seniors in discussing their concerns.

According to the report’s nearly all physicians said the decision to assess patients for cognitive impairment is driven, in part, by reports of symptoms or requests from patients, family members and caregivers. Those who choose not to assess cognition cited a lack of symptoms or complaints from a patient (68 percent), lack of time during a patient visit (58 percent) and patient resistance (57 percent) as primary factors.

In addition, the Alzheimer’s report says most physicians welcome more information about assessments, including which tools to use (96 percent), guidance on next steps when cognitive problems are indicated (94 percent) and finally steps for implementing assessments efficiently into practice (91 percent).

The Alzheimer’s Association is working to help educate physicians on best practices for conducting brief cognitive assessments and to ensure that all seniors understand what to expect from an assessment, as well as how to navigate an Alzheimer’s diagnosis and care planning when needed,” said Pike. “As the number of individuals living with Alzheimer’s continues to increase, we need to detect the disease early and give individuals the best opportunity to plan for the future,” she says.

The survey found that while 51 percent of the older respondents are aware of changes in their cognitive abilities — including changes in their ability to think, understand or remember — only 40 percent have ever discussed these concerns with a health care provider, and fewer than 15 percent report ever having brought up cognitive concerns on their own.

Instead, 93 percent of the senior survey respondents say they trust their primary care physician to cognitive testing for thinking or memory problems if needed. Yet, 47 percent of these physicians say it is their standard protocol to assess all patients age 65 and older for cognitive impairment. But, only 26 percent of the senior’s report having a physician ever ask them if they have any concerns about their cognitive function without them bringing it up first.

“The findings indicate there are missed opportunities for seniors to discuss cognitive concerns and problems in the exam room,” said Pike. “We hope the report will encourage seniors and physicians both to be more proactive in discussing cognitive health during the Medicare Annual Wellness Visit and other routine exams,” she says.

Combating Alzheimer’s in the Ocean State

On the heels of the release of Rhode Island’s updated State Plan on Alzheimer’s Disease and Related Disorders by Lt. Governor Dan McKee on February 26th, the released 2019 Facts and Figures reinforces the need to implement the recommendations of the State Plan.

“These facts and figures truly demonstrate the public health crisis we are in both nationally and here in Rhode Island with Alzheimer’s disease,” said Donna M. McGowan, Executive Director with the Alzheimer’s Association Rhode Island Chapter. “We are projecting cases of the disease to increase by 17% in this state by 2025. Having this data helps us to understand the scope of the issue and what we need to do to address peoples’ needs long term.”

“With Medicaid costs rising almost 23% to care for someone with Alzheimer’s, caregivers and families need to be provided resources that they need. Our updated State Plan helps to provide the framework to address some of those concerns,” said McGowan. “I commend our state lawmakers for recognizing how deeply Alzheimer’s disease and related disorders affects our citizens here and for their support in trying to address it with legislation.”

Andrea Palagi, Director of Communications for Lt. Governor Dan McKee, says that there are several Alzheimer’s-related bills being consider by state law makers this year. “It’s the year for Alzheimer’s” she says.

With the newly released 2019 Alzheimer’s Disease Facts and Figures report we hopefully won’t see the state’s updated Alzheimer’s Plan sitting on a bureaucrat’s dusty book shelf.

 For a copy, go to www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf.

 

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.

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.