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

Published in the Woonsocket Call on May 12, 2019

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

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

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

Improving Supports for Those Afflicted with Alzheimer’s

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

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

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

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

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

Taking Bold Actions to Confront Alzheimer’s Epidemic

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

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

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

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

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

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

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

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

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

Alzheimer’s Impacts Almost Everyone

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

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

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National Report Grapples with Impending Alzheimer’s Epidemic

Published in the Pawtucket Times, July 25, 2013
 
            This 56 page report must not sit on a bureaucrat’s dusty shelf.          
 
            With the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention release a report last week to address a major public health issue, an impending Alzheimer’s disease epidemic on the horizon.  
 
            Researchers say that in 2013, an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder the prevalence may triple, skyrocketing to almost 14 million people.  Simply put, Alzheimer’s disease is now the 6th leading cause of death and 5th among those 65 to 85 years of age.
 

A Call to Arms

 
            On July 15, 2013, CDC, the federal agency charged with protecting public health and safety through the control and prevention of disease, injury, and disability, and the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, unveiled The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018 at the 2013 Alzheimer’s Association International Conference in Boston.
 
           The released report calls for public health officials to quickly act to stem the growing Alzheimer’s crisis and is a follow-up to the 2007 The Healthy Brain Initiative: a National Public Health Road Map to Maintaining Cognitive Health.
 
            “The public health community is now paying greater attention to the Alzheimer’s epidemic that millions of families have been facing for decades and that is poised to drastically increase,” said Robert Egged, Vice President of Public Policy at the Alzheimer’s Association. “On the heels of the 2012 release of the country’s first-ever National Alzheimer’s Plan, the Alzheimer’s Association and CDC have partnered again to create a tool for public health officials to improve the quality of life for those families and advance cognitive health as a integral component of public health,” says Egged.
 
            Released five years ago, the original Road Map addressed cognitive health and functioning from a public health perspective and provided a framework for the public health community to engage cognitive health, cognitive impairment, and Alzheimer’s disease and other dementias. More than 280 experts in the field contributed to this new Road Map report that outlines specific actions steps that state and local public health officials can take to promote cognitive functioning, address cognitive impairment for individuals living in the community and help meet the needs of caregivers.
 
            While federal agencies play a critical role in leading and funding efforts to address Alzheimer’s disease, state and local health departments organize and provide public health services at the community level.
 
            “The goal of the Healthy Brain Initiative is to enhance understanding of the public health burden of cognitive impairment, help build evidence-based communications and programs, and translate that foundation into effective public health practices in states and communities. This Road Map provides guidance to states, communities, and national partners to plan for and respond to this major public health issue,” said Lynda Anderson, PhD, Director of the Healthy Aging Program at CDC.
 
            A former Assistant Secretary at the U.S. Administration on Aging, Bill Benson, now a managing partner of Silver Spring, Maryland-based, Health Benefits ABC, notes that the cost of providing care to people with Alzheimer’s disease will have a drastic impact on the nation’s economy due to the cost of lost productivity, and the care costs for those no longer able to care from themselves. “This does not include the profound personal impact and consequences to those who suffer from Alzheimer’s and to their loved ones,” he says.
 
            “The scope, cost and the extraordinary burden both to individuals and to society make it a true health crisis,” says Benson, stressing that public health officials need to know more about the disease and those who have it, better ways to diagnosis it.  There must also be a better understanding of the economic impact and programs and services that are proven to ease the burden of those who suffer from it and their caregivers, he adds. 
 

Action Steps for Local Communities to Follow

 
            The Road Map report includes more than 30 action steps that the public health community can take at the federal, state and local levels over the next five years to address cognitive health and cognitive impairment from a public health perspective. The actions are intended as a guide for what state and local public health officials could do – on their own or with other national, state and local partners. Agencies are encouraged to select those actions that best fit state and local needs and customize them to match priorities, capabilities and resources.
 
            As to specifics, the Road Map report calls for improved monitoring and evaluation of persons with dementia including Alzheimer’s disease and younger onset as they relate to employment and employers, and defining the needs of these individuals and their caregivers.  Also, increased support should be given to state and local needs assessments to identify racial/ethnic; lesbian, gay, bisexual, and transgender; socioeconomic; and geographic disparities related to cognitive health and impairment.
 
            Public health officials must educate and empower the nation in confronting the epidemic of Alzheimer’s disease by promoting advance care planning and financial planning to care partners, families, and individuals with dementia in the early stages before function declines.  They can also identify and promote culturally appropriate strategies designed to increase public awareness about dementia, including Alzheimer’s disease, to reduce conflicting messages, decrease stigma, and promote early diagnosis.
 
            The Road Map report urges that sound public health policies be developed and partnerships created to collaborate in the development, implementation, and maintenance of state Alzheimer’s disease plans. It also recommends that state and local government integrate cognitive health and impairment into state and local government plans (e.g. aging, coordinated chronic disease, preparedness, falls, and transportation plans).
 
            Finally, the Road Map report also recommends that strategies be developed to help ensure that state public health departments have expertise in cognitive health and impairment related to research and best practices.  Support must also be provided to continuing education efforts that improve healthcare providers’ ability to recognize early signs of dementia, including Alzheimer’s disease, and to offer counseling to individuals and their care partners.
 

A Local View

            Maureen Maigret, policy consultant for the Senior Agenda Coalition of RI coordinator of the Rhode Island Older Women’s Policy Group, agrees with the assessment of theRoad Map report, especially with the Ocean State having the “highest percent of persons age 85 and over in the 2010 Census and this is the population that is growing fast and most likely to have dementia.”
 
            Maigret notes the economic impact will have significant impact across our economy for the state budget and for individual families. “It is imperative for our public officials to promote programs to identify those with early cognitive problems and implement policies to strengthen community and caregiver supports that will help persons to safely remain in home and community settings as long as possible, she says.
 
            The Rhode Island General Assembly passed legislation this year that requires caregiver assessments in the state Medicaid long term care system.  “It’s a good first step in helping caregivers. But we must do so much more to inform the public about available resources, to adequately fund assistance programs such as RIde, Meals on Wheels and respite services and to promote cognitive screening as part of annual wellness visits funded by Medicare,” she says. 
 
            “Having a clear active mind at any age is important but as we get older it can mean the difference between dependence and independent living,” says Executive Director, Donna McGowan, of the Alzheimer’s Association-Rhode Island Chapter. “We are excited that the CDC has partnered again with the Alzheimer’s Association to create a tool for public health officials to improve the quality of life for those families afflicted by the disease,” she says.
 
            For more information on The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018, visit alz.org/publichealth. For more information on Alzheimer’s disease and the Alzheimer’s Association, call 1-800-272-3900 or visit alz.org®.
 
            Herb Weiss, LRI ’12 is a Pawtucket-based writer who covers aging, health care and medical issues.  He can be reached at hweissri@aol.com.

 

 

 

Deciphering the Effectiveness of Alzheimer’s Research Findings

           Published July 6, 2012, Pawtucket Times 

          Over a decade my mother was afflicted with the devastating medical disorder, Alzheimer’s Disease. Over the years with this affliction her physician would keep our family updated on the effectiveness of pharmaceutical research on medications that could put the breaks on this devastating disorder, one that would ultimately erase her short and long-term memory, making her husband of sixty years, and adult children virtual strangers to her.

            My family like hundreds of thousands of baby boomers and seniors sought out information from local newspapers, senior publications, national magazines, like Time or Newsweek, to unravel the medical mysteries of Alzheimer’s Disease.  Occasionally, I, like many shoppers at the local grocery store would sneak a peek, reading the National Enquirer while waiting in line looking for a little bit more information on new effective treatments for Alzheimer’s Disease.

Unraveling the Mysteries of Alzheimer’s Disease

            Oftentimes it becomes very confusing for caregivers to determine which profiled treatments are promising ones and which ones are not, due to the diversity of opinions in the research community.  Some articles might detail the effectiveness of taking Vitamin E; while others stress the effectiveness of Gingko, noting how it just might improve your memory.  Others might describe studies that indicate that estrogen replacement therapy is not really an effective treatment for Alzheimer’s Disease for some women.  Or some might even issue a warning to the reader to “not eat off of aluminum plates” because some research findings seem to indicate that an accumulation of heavy metals, such as aluminum, in the brain might cause the devastating disorder of Alzheimer’s.

            Years ago I provided the following helpful tips to readers of my column that might just unravel the mysteries of reported research findings in Alzheimer’s research that are reported by the nation’s media.  These tips are just as true eleven years later.

            Always beware of glitzy headlines. Time limitations keep people from reading every word in articles that appear in their daily, weekly or monthly newspapers.  As a result, may readers just choose to quickly scan the headlines for their information.  Don’t judge an article by its cute headline.  The content of an article is much more balanced than the headline that is composed of catchy words, crafted to draw the reader in.

            Look for authoritative commentary.  You can consider an article to be more credible when it provides multiple quotes on the indications of an Alzheimer’s treatment.  Consider the report to have done a good job if there is an authoritative expert commentary of the significance of the study.  Two likely sources might come from staffers employed by either the National Alzheimer’s Association or the National Institute of health, a major federal government agency that fund’s Alzheimer’s research studies.  One might consider the National Alzheimer’s Association point of view to be less biased and a more reliable opinion than those researchers who have ties to a pharmaceutical company that issued the press release.

            Determine if there are disputes in research findings.  Keep in mind that even if a research study is reported there might be those persons who believe that the study is not well designed or has major research flaws.   On the other hand, the study might just be accepted by the scientific community as a solid study.  However, there might still be serious disagreements about how to interpret the results or how to classify it.  Some researchers might consider it a major study while others would not.  A well-researched article will include the quotes of those who oppose the study.

Seeking out Reliable Expert Sources

            Are you still confused by how to cull articles for tips to learn about safe and effective treatments for Alzheimer’s?  Where do we go from here?  Caregivers should view any article written about new Alzheimer’s treatments as informational in nature.  The article can open the door to the nation’s research community and it now becomes your responsibility to do your homework by seeking out more details about what the research findings indicate.

            If the article describes the results of an actual published research study, obtain the scientific journal with the published study at your local library or search for it on the Internet.   When found carefully read it.  If the findings are reported from a presentation at a conference attempt to track down the researchers for more information.  Finally cruise the Internet and check out the official Websites of the Alzheimer’s Association or the National Institute on Aging, to determine if you can locate more information about a reported new treatment.

            Finally, don’t hesitate to call Donna McGowan, Executive Director of the Alzheimer’s Association – Rhode Island Chapter at 401 421-0008 or email, Donna.McGowan@alz.org, to solicit the organization’s comments on research findings reported by the media. Remember Federal agencies, along with national and state Alzheimer’s organizations monitor research studies and their implications for treatment.

              Herb Weiss is a Pawtucket-based freelance writer who covers aging, health care and medical issues.  His Commentaries are published in two Rhode Island daily’s The Pawtucket Times and Woonsocket Call.