Tag Archives for Alzheimer’s Association of Rhode Island

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.

McKee to Unveil Updated State Alzheimer’s Plan

Published in Woonsocket Call on February 10, 2019

Seven months ago with the hiring of Michael Splaine and Kate Gordon of Splaine Consulting, a nationally recognized health policy firm that has provided content matter expertise to over two dozen state Alzheimer’s plans, Lt. Governor Daniel J. McKee, who serves as chair of the state’s Long-Term Care Coordinating Council, rolled up his sleeves to begin his legislative charge to update the 2013 state Alzheimer’s plan.

The hiring of the Columbia, Maryland-based consultants was made possible by two grants totaling $30,000 given by the Tufts Health Plan Foundation and Rhode Island Foundation. When announcing the successful fundraising effort to raise those monies, McKee observed, “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 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,” says McKee, noting that it is one of the most challenging public health issues facing Rhode Island today. “With the number of affected Rhode Islanders projected to rise to 27,000 by 2025, elected leaders, advocates, caregivers, clinicians and researchers must come together to take unified, targeted action,” he says.

The compilation of the plan is the result of collaboration between McKee, the Alzheimer’s Association Rhode Island Chapter and the state’s Division of Elderly Affairs (DEA). In 2012, the General Assembly directed the Long-Term Care Coordinating Council to serve as the organizational umbrella for a work group that would oversee the development of the plan. In 2013, the state’s five-year Alzheimer’s plan was published. Last year, efforts to update it began.

Last July under the leadership of McKee, Splaine and Gordon worked closely with the Alzheimer’s Association Rhode Island Chapter, DEA, researchers, advocates, clinicians and caregivers sitting on the Lieutenant Governor’s Executive Board on Alzheimer’s,to develop a community-focused strategy for the 2019 State Plan on Alzheimer’s disease and Related Disorders. Over a six-week period, that group held 23 town hall meetings, conducted 45 expert interviews and surveyed (in both England and Spanish) more than Rhode Islanders impacted by Alzheimer’s.

The Official Release…

On Feb. 26 at a press conference in the State Library at 3:30 p.m., McKee will join Sen. Cynthia A. Coyne (D-Barrington) to officially unveil the plan, Rhode Island’s official roadmap to combat the growing Alzheimer’s epidemic. Coyne will announce the introduction of a Senate resolution on behalf of McKee to officially adopt the plan. (House staff are still reviewing the updated plan. There is no House sponsor at this time)

Coyne’s resolution follows her introduction of legislation to create a Rhode Island program to address Alzheimer’s disease within the Department of Health (DOH). The bill would also create an advisory panel to review and make recommendations to improve the state policies, research and care.

Once the Rhode Island General Assembly approves the plan, the Long-Term Care Coordinating Council’s executive board will 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. More than 30 recommendations are detailed in the 35-page plan, which calls for the implementation of three main recommendations.
In order to keep the plan from sitting on a dusty bureaucrat’s bookshelf, the first recommendation calls for the creation of one director-level position within DOH to assist in the coordination of its recommendations. The second urges promoting Alzheimer’s disease and related dementia research opportunities of all types, including federal opportunities to a broad group of Ocean State researchers. Finally, the third calls for the inclusion of brain health in existing publicly-funded promotion and chronic disease management activities.
Many of the recommendation can be easily implemented without additional state funding or legislative approval, says McKee. But, for those that may require state funding, he plans to make it a priority to lobby for those monies.

Taking a Close Look

Maureen Maigret, co-chair, state’s Long-Term Care Coordinating Council, says, “It is terrific to have the plan update completed as it provides direction to our state government leaders and other persons in key positions to proceed with implementation of the recommendations, which can have such far-reaching impacts on the many thousands of individuals with neuro-cognitive conditions and their dedicated caregivers, both those who are unpaid and those in the paid work force.”

Maigret notes that the updated plan’s recommendations also call for assisting family caregivers who provide the vast majority of care for persons with Alzheimer’s and related dementias, expanding subsidies for home and community care services offered by the state’s Division of Elderly Affairs, and making family caregiver support services part of the Medicaid program.

According to Maigret, one issue not mentioned in the updated plan is the need for increasing state funding for the DEA’s respite care program, which has a waiting list. “This is an important program that gives caregivers small subsidies to purchase ‘care breaks.’ Our Aging in Community Subcommittee and the AARP and Senior Agenda Coalition will all be advocating to restore state funds to this program (in the upcoming legislative session),” she says.

“The Alzheimer’s State Plan is a thorough blueprint to address the growing Alzheimer’s crisis by creating an infrastructure and accountability that will help build dementia-capable programs,” said AARP Rhode Island State Director Kathleen Connell. “We applaud the work that has gone into the report and the continuing efforts to address Rhode Island’s growing needs. We are especially encouraged to see that the plan supports community education about caregiver health and caregiver rights under the CARE Act, which is legislation that AARP championed in the General Assembly. AARP also encourages and supports age-friendly communities, which includes dementia-friendly awareness and resources so that people of all abilities can thrive as they age.”

Sen. Coyne added, “Alzheimer’s impacts tens of thousands of Rhode Islanders, and we need a coordinated strategy to improve education among the public and training for providers, and to promote research opportunities. This plan provides a strategic framework for moving forward to bring positive policy change where it is needed.”

See you at the press conference.

For details about the press conference and the Alzheimer’s State Plan, contact Andrea Palagi, Communications Director, Office of Lt. governor Daniel J. Mckee at
Andrea.Palagi@ltgov.ri.gov.