Tag Archives for Alzheimer’s Diseae

Rhode Island’s 5-year plan to support persons with Alzheimer’s, related disorders

Published in RINewsToday on February 19, 2024

Last week, state and federal leaders, and the Alzheimer’s Association of Rhode Island, gathered at the East Providence-based PACE Rhode Island to announce the release of  the latest Rhode Island Alzheimer’s Disease and Related Disorders (ADRD) 2024-2029 State Plan. This 25-page strategic plan, details 36 recommendations to improve the quality of life and accessibility of care for Rhode Islanders with ADRD by the end of this decade.

The 5-year plan provides Rhode Island a “Rhode map” to channel its resources to provide care for a growing number of persons with ADRD. In 2020, an estimated 24,000 adults in Rhode Island ages 65 and older were living with ADRD (being cared for by over 36,000 unpaid caregivers). This makes Rhode Island the state with the third highest percentage of Alzheimer’s disease in New England. And this number is expected to increase by nearly 13% over the next few years, with state officials calling it a growing public health crisis.

The State Plan was developed by the RI Advisory Council on Alzheimer’s Disease and Related Disorders and statewide partners consisting of researchers, advocates, clinicians, and caregivers. This public process resulted in identifying dozens of strategies to empower all individuals impacted by dementia to achieve their best quality of life.  (Editor’s note: Weiss serves on the Rhode Island ADRD Advisory Council).

To ensure that the State Plan was community-led and inclusive, the Rhode Island Department of Health (RIDOH) hosted an in-person strategic planning session at PACE-Rhode Island in July of 2023 with nearly 50 attendees representing community-based organizations, people with lived experience, health system partners, academia, and social service agencies.

The released State Plan also calls for the creation of accessible neighborhoods with walkable sidewalks, greater access to healthy food options, and safer public spaces for people living with dementia.  It highlights the importance of convening a workgroup focused on elevating and addressing issues of health equity in dementia care.  It even recommends working closely with Rhode Island cities and towns that have a high prevalence of ADRD to develop action plans that promote age and dementia friendly resources and information that identify local supports for people with dementia and their caregivers.  

From the Plan: Goals for the next 26 years in staffing call for adding 15 more gerontologists and 2,069 aides by 2050 – or on average: .58 gerontologists and 80 aides per year. (Editor’s Note)

The announcement and launch

Lt. Gov. Sabina Matos and RIDOH, joined by Gov. Dan McKee, Sen. Jack Reed, Office of Healthy Aging Director Maria Cimini, and the Alzheimer’s Association of RI, along with Kate Michaud of Congressmen Gabe Amo’s Office, gathered on Feb. 15 at PACE Rhode Island, to launch the release of Rhode Island’s road map to coordinate resources to combat the growing incidence of ADRD cropping up throughout Rhode Island communities.

“This State Plan brings together every part of our government to support Rhode Islanders whose lives are affected by ADRD,” said Lt Gov. Sabina Matos, kicking off the 30-minute press conference. “Under this plan, we’re connecting federal, state, and local government resources to build strong communities where people with dementia can thrive. I’m grateful to be able to serve alongside the community leaders and experts on our state’s Advisory Council on ADRD in coordinating these efforts and carrying on the work started by Gov. McKee,” she said.

“The Plan is our state’s promise that you will never face these things alone – because Team Rhode Island is behind you,” pledged Matos.

“Rhode Islanders and their loved ones affected by Alzheimer’s or related disorders are at the heart of this new state plan,” said Gov. McKee, who as Lt. Governor finalized and distributed the previous five-year ADRD STATE Plan in 2019. 

“Giving them the necessary resources and information to enhance their health and well-being is critical,” said the Governor, stressing that a cure is possible. “We all can play a role, and one of the most important roles people can get involved in is through clinical trials,” he says.

Gov. McKee recognized the efforts of Matos, the ADRD Advisory Council, and the researchers, advocates, and caregivers across our state for crafting, he said, “a very comprehensive plan that promotes inclusion and support.”

Under McKee’s previous five-year plan and its update, the state has accomplished the main goals of dedicating a full-time employee (funded with federal dollars) to coordinate ADRD strategy and promoting ADRD research opportunities in Rhode Island, and including brain health in the state’s other chronic disease management activities. 

Sen. Jack Reed, who serves on the largest and most powerful committee in the Senate responsible for crafting bills that fund the federal government and its operations, left Capitol Hill to travel back to the Ocean State for the press conference, to assure the attendees that he will continue pushing Congress to invest in finding a cure for ADRD. 

Last year, Reed noted that Congress increased the NIH budget to $47.5 billion, and set aside $3.7 billion specifically for Alzheimer’s disease reach. “I’m working hard to raise that total by at least $100 million this year,” he said.

Reed stressed that it is “critical for state officials to continue to focus on effective ways to improve the quality of life for those impacted by dementia and deliver caregiver support.”  But, when it comes to brain health studies, Rhode Island-based researchers are on the “leading edge of the fight against Alzheimer’s.” 

Sandra Powell, Deputy Director at the Rhode Island Department of Health called launching of the State Plan a “big deal” stressing this work is so critical.

According to Powell, the State Plan takes a comprehensive approach focusing on lifestyle modifications, supporting healthcare professional engagement to increase early detection and diagnosis, building a workforce to deliver person-centered dementia care, and using data to drive decision-making and to tackle health disparities. 

Since receiving funding in 2020 from the Centers for Disease Control and Prevention, “we’ve done a lot to connect with partners and advocates to leverage resources for persons with dementia,” says Powell.

“Although most Rhode Islanders and Americans likely know somebody who is living with Alzheimer’s, if people think it’s not their concern, consider these facts. 1 in 3 senior citizens will die as a result of Alzheimer’s or a related dementia. Alzheimer’s disease costs the government more than $350 billion per year for care and more, and by 2050, this disease is expected to cost the government alone 1 trillion dollars,” said Donna McGowan, Executive Director of the Alzheimer’s Association of RI. “So, think again if you believe it’s none of your business. This killer is all of our business!” she says.

“With the great progress and improvement, the plan has seen, our focus remains on creating the infrastructure and accountability necessary to build ADRD-capable programs and services,” says McGowan. With the U.S. Food and Drug Administration approving drugs, like Leqembi, that are proven to effectively slow down the progression of the devastating disease for those living with early onset Alzheimer’s, she calls on Medicare to cover most of the costs. “At the moment, the $26,000 cost copayment for the drug makes access largely prohibitive,” she notes.

“It is high time that the discrimination against those living with Alzheimer’s stops,” says McGowan, stressing the Medicare covers most of the costs for drugs and treatment of major disease, specifically cancer, diabetes, HIV/AIDS, heart disease and COVID.

According to Joseph Wendelken, RIDOH’s public information officer, funding from the CDC, for a five-year implementation grant, $500,000 for each year of the grant cycle from Sept. 30, 2023, to Sept. 29, 2028, has been secured to support the development and implementation of the State Plan. And state funds allocated to key partners such as the Office of Healthy Aging, will help to advance the work of the plan,” he says.

Sen. Sheldon Whitehouse, attending the Munich Security Conference, and Congressmen Seth Magaziner and Gabe Amo, at the Capitol expecting a vote, couldn’t attend the press conference. The federal delegation sent its support for the newly released Alzheimer’s State Plan.

A Final Note…some ideas left in the “parking lot”, but can be included in other plans

“The new 5-year State Alzheimer’s Disease and related Disorders Plan builds nicely on the prior Plan from 2019,” observes Maureen Maigret, Policy Advisor for the Senior Agenda Coalition, who also serves on the state’s ADRD Advisory Council. “The five-year plan continues to be based on a strong public health approach emphasizing education about brain health, information on available resources, early detection, training of the healthcare workforce across care settings on the care and service needs of persons dealing with dementia, caregiver supports and includes a strong focus on equity,” she says.

According to Maigret, a former Director of the former state’s Department of Elderly Affairs, it includes some new areas of focus for community involvement and attention to ‘age-friendly’ issues. “The next step — developing the Action Steps needed for Plan implementation is critical as it requires collaboration among many parties,” she says.

“The fact that we have a federal grant and dedicated staff should ensure the Plan will be a working document and guide development of needed actions moving forward. There are also a number of concrete ideas and suggestions contained in a “parking lot” that merit consideration,” says Maigret.

As to the phrase “contained in a parking lot,” Maigret noted that ideas were generated by participants in the Strategic Discussion that took place in July 2023. Some of the input that was provided did not fit into the existing plan objectives and strategies and was placed in a “parking lot,” she says.

“Many of the “parking lot” suggestions could be addressed in other State Plans such as the Rhode Island State Plan on Aging or the Rhode Island State Plan on Caregiving. As the current strategies are achieved, these ideas may be considered for inclusion in the plan, with input from stakeholders,” says Maigret.

The 2024-2029 ADRD State Plan is available for all Rhode Islanders to read online by going to https://health.ri.gov/publications/stateplans/2024-2029Alzheimers-disease-and-related-disorders.pdf, or read or downloaded, below.

This is the second in-depth policy report developed and released by Lt. Gov. Matos’s policy councils, following the 2023 release of Meeting the Housing Needs of Rhode Island’s Older Adults and Individuals with Chronic Disabilities and Illnesses from the Long Term Care Coordinating Council.

If you or someone you know needs supported related to ADRD, call 1 800-272-3900. The Alzheimer’s Association website (www.alz.org) offers a wide range of dementia and aging related resources that connect individuals  facing dementia with local programs and services.

Herb Weiss, LRI-12, serves on the state’s ADRD Advisory Council and is a Pawtucket-based writer who has covered aging, health care and medical issues for over 43 years. To purchase his books, Taking Charge: Collected Stories on Aging Boldly and a sequel, compiling weekly published articles, go to herbweiss.com.

Aging Programs Get Slashed in Bush’s War Budget

Published in Pawtucket Times on February 18, 2002

In the shadow of the horrific terrorist attacks on Sept. 11th, domestic programs take the backseat in President Bush’s $ 2.13 trillion fiscal year 2003 budget, released in early February, with significant funding increases being targeted for both military and  homeland defense.

As 77 million baby boomers approach their 65th birthdays within the next decade, aging groups say the President’s wartime budget does not go far enough in many areas to meet the aging baby boomer’s needs in the coming years.

One of the most hotly debated Congressional issues is affordable prescription drugs. With the Congressional election looming next year, this is certain to be a key issue in every state. Don’t look for this issue to lose importance to seniors or to the aging groups who call for meaningful Medicare drug benefits.

According to the Congressional Budget Office, over the next 10 years, Medicare beneficiaries will spend about $1.6 trillion out-of-pocket on prescription drugs. But the recently released Bush budget proposal only contains $ 190 billion over 10 years for Medicare reform, including $ 77 billion to assist seniors with prescription drugs.

The National Council on Aging (NCOA), a Washington, D.C.-based advocacy group, estimates that on average, the Bush administration’s proposal would cover less than one out of 10 dollars spend on drugs by seniors.

Martha A. McSteen, president of the National Committee to Preserve Social Security and Medicare, agreed that Bush’s budget proposal shortchanges seniors and the disabled in providing needed health care and services.

In his State of the Union address, the president restated his campaign promise to provide prescription drug coverage for every senior, noted McSteen, who added, “That is an empty promise if the budget does not contain these needed resources.

“At least $ 450 billion is needed over the next 10 years to provide a comprehensive and affordable prescription drug benefit as part of the Medicare program,” McSteen says.

John Rother, AARP’s Policy and Strategy Director, said, “Although federal budget constraints are greater than last year, so too is the need for affordable prescription drugs for Americans age 65 and over. Unfortunately, disease and pain did not disappear with the budget surplus.”

However, U.S. Sen. Lincoln Chafee, R-Rhode Island, said he believes the President’s budget request recognizes the precarious state of the Medicare system, as well as other challenges faced by the nation’s seniors.

“The president has acknowledged the need for a Medicare prescription drug benefit as well as [the need] for a significant increase in funding for disease research conducted by the National Institutes of Health,” he said.

While Chafee said he will push for legislation that will create more comprehensive Medicare prescription drug benefits than the legislation proposed by the president, he warned the deficit created by the combination of the economic slowdown, the war on terrorism and last year’s tax cut will make enactment of any new spending programs more difficult to accomplish.

Meanwhile, programs under the Older Americans Act, are provided with less funding in Bush’s budget proposal than they were last year.

“Around the country, people are on waiting lists for meals-on-wheels programs and congregate meals programs,” said McSteen.

“There are state and local programs that need additional federal funds to counter the increasing problems of elder abuse. The administration’s funding request for these programs is woefully inadequate.”

Other federal programs get sliced and diced under the Bush administration’s FY 2003 budget, according to U.S. Rep. Patrick Kennedy, D-Rhode Island, who pointed to an 8 percent cut for the Centers for Disease Control and Prevention’s budget for chronic care.

The four-term Congressman and member of the House Aging Caucus said he finds this cut troubling due to the significant gains that have been made in efforts to prevent and treat diseases that effect an aging population.

With a growing number of families caring or loved ones with Alzheimer’s Disease, Kennedy said he strongly opposes the Bush administration’s axing of the Missing Alzheimer’s Disease Patient Alert Program, which helps protect and locate missing patients with the devastating disease.

The program has assisted in the return of more that 5,700 wanderers and increased its data base to 67,000 persons with Alzheimer’s,” said Kennedy. “It has succeeded in its many efforts on a budget of $ 898,000 in fiscal year 2002.”

While prescription drugs comes up a loser in the Bush budget, some aging initiatives are clearly on the White House’s radar screen.

Bush’s budget proposal provides about $ 3 billion in additional funds toward research and is the final installment in a five-year effort to double the size of the National Institute of Health budget, says McSteen. She said she believes increased federal funding would assist in “producing breakthroughs in the prevention, treatment, management of conditions associated with aging.”

The Administration’s budget also provides a personal exemption to home caretakers of family members and the funding of respite and direct care worker demonstration projects.

Now Bush’s Budget proposal moves to Congress, where a Republican-controlled House and Democratic Senate will make major revisions, ultimately hammering out a final road map to federal spending.

The funding of federal programs to meet the needs of older Americans is crucial as our nation’s population ages.

Furthermore, with an increasing federal budget deficit, Republican and Democratic lawmakers must not get tied down to partisan wrangling as they attempt to iron out differences in creating a Medicare benefit to make prescription rugs more affordable to seniors.

As the Congressional elections get closer, seniors will call for concrete legislative action, not political rhetoric or fancy words.

Alzheimer’s News often Confusing to Interpret

Published in Pawtucket Times on March 26, 2001

Everyday hundreds of thousands of caregivers scan newspapers, senior papers, Time, Newsweek, Modern Maturity or even National Enquirer in hopes of learning a little more about new, effective treatments for Alzheimer’s Disease.

Oftentimes it is confusing to determine which treatments are promising and which ones that are not, due to the diverse opinions in the research community. For instance, one article might report on Vitamin E; others might state how Ginko really improves your memory and is good for Alzheimer’s patients to take. 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 warn the reader “Don’t eat off of aluminum plate

s” because research seems to indicate that an accumulation of heavy metals, such as aluminum, in the brain may surely cause Alzheimer’s.

Here are some helpful tips for unraveling the mysteries of Alzheimer’s Disease as reported in media.

Beware of glitzy headlines. Time limitations keep people from reading every article in their daily, weekly or monthly newspapers. As a result, many readers just quickly scan the headlines for information. Don’t judge an article by its glitzy title. The content of an article is much more balanced than the headline that is catchy and written to draw the readers in.

Look for authoritative commentary. You can consider an article more credible when it provides multiple quotes on the indications of an Alzheimer’s treatment. The reporter has done a good job in reporting if there is authoritative commentary on the significance of the study.  Two likely sources might be staffers from either the National Alzheimer’s Association  or the National Institutes of Health, a major funder of Alzheimer’s research studies.  Remember that the National Alzheimer’s Association’s point of view tends to be less biased and a more reliable opinion that those of researchers that have ties to a pharmaceutical company that issued the press release.

Disputes on 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 categories it as a minor one.  A well-researched article will include the quotes of those who oppose the findings.

Are you still confused by how to cull articles for tips on safe and effective treatments for Alzheimer’s? Where do we go from here? Caregivers should view any articles written about new Alzheimer’s treatments as informational in nature. The article can open the door to the researcher community and it now becomes your responsibility to do homework and find 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 and carefully read it. If the findings are reported from a presentation at a conference, attempt to track the researcher down for more information.  Finally, cruise the Internet and check out the official Web sites of the Alzheimer’s Association or the National Institute of Aging to determine if they can provide information about a reported new treatment.

Finally, don’t hesitate to call your local chapter or the National Alzheimer’s Association to solicit their comments. They will gladly share all the information they have. Remember these groups closely monitor research studies and their implications for treatment.