Tag Archives for dementia

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.

Warning: Being lonely and isolated is hazardous to your health

Published in RINewsToday on May 8, 2023

Last Sunday, just days before releasing an advisory or “public statement” raising the alarm about the devastating impact of loneliness and isolation in the United States, U.S. Surgeon General Vivek Murthy published an essay in the New York Times announcing its planned release. In his essay he also talking about his own personal struggles with loneliness and called for enhancing social connections to be made a “top public health priority”. 

One day before the release of Murthy’s new advisory on May 2nd, White House Press Secretary Karine Jean-Pierre said Murthy’s new advisory is a component of the Biden administration’s bigger efforts to address the nation’s mental health.  The releasing of this advisory was well-planned, being issued in May, designated as Mental Health Awareness Month in the US.

Sounding the alarm

The 81-page advisory report titled “Our Epidemic of Loneliness and Isolation,” finds that even before the COVID-19 pandemic, about half of U.S. adults reported experiencing measurable levels of loneliness.

While the advisory is “not an extensive review of the literature” the information was culled from electronic searches of research articles published in English and resources suggested by “subject experts,” with priority given to meta-analyses and systemic literature reviews.

As the nation’s chief advocate for public health, Murthy is using his office as a bully pulpit to issue an advisory calling for the nation’s immediate awareness and attention to the widespread epidemic of loneliness and isolation. He also provides a roadmap as to how it might be swiftly addressed.

According to the advisory, even before the onset of the COVID-19 pandemic, approximately half of U.S. adults reported experiencing measurable levels of loneliness. Disconnection fundamentally affects our mental, physical, and societal health. Loneliness and isolation increase the risk for individuals to develop mental health challenges in their lives, and lacking connection can increase the risk for premature death to levels comparable to smoking up to 15 cigarettes daily.

The advisory noted that the physical health consequences of poor or insufficient connection include a 29% increased risk of heart disease, a 32% increased risk of stroke, and a 50% increased risk of developing dementia for older adults. Additionally, lacking social connection increases risk of premature death by more than 60%.

While there are no new promises of federal dollars for tackling this societal problem, the Surgeon General’s advisory is tended to raise awareness and lays out a framework for a National Strategy to Advance Social Connection, which has never been implemented before in the United States. The advisory also provides suggestions about how specific groups – including governments, providers, researchers, health organizations, schools, high-tech companies, media, parents and caregivers, community-based and philanthropy organizations, workplaces and individuals – can take to increase connection in their lives, communities, and across the country and improve their health.

“Our epidemic of loneliness and isolation has been an underappreciated public health crisis that has harmed individual and societal health. Our relationships are a source of healing and well-being hiding in plain sight – one that can help us live healthier, more fulfilled, and more productive lives,” said Murthy, in a statement announcing the release of this advisory. “Given the significant health consequences of loneliness and isolation, we must prioritize building social connection the same way we have prioritized other critical public health issues such as tobacco, obesity, and substance use disorders. Together, we can build a country that’s healthier, more resilient, less lonely, and more connected.,” he said.

Brigham Young University Professor of Psychology and Neuroscience, Julianne Holt-Lunstad agrees with the Surgeon General’s assessment of the national importance of recognizing that loneliness and isolation can be hazardous to your health and to society’s wellbeing. “The advisory shows that too many Americans lack social connection in one or more ways and the evidence of the severe consequences have been growing for decades. While the pandemic helped raise awareness, since this was problem well before the pandemic, getting back to normal is not enough,” she says. 

“This advisory helps bring greater awareness to this important public health issue, and sets forth a framework for a national strategy –with detailed recommendations for various stakeholders—to begin to take action.  The personal and societal costs of inaction are far too high,” says Holt-Lunstad.

Along with affecting a person’s physical health, loneliness and isolation can contribute substantially to mental health challenges, too, says the advisory.  In adults, the risk of developing depression among people who report feeling lonely often is more than double that of people who rarely or never feel lonely.

Meanwhile, loneliness and social isolation in childhood increase the risk of depression and anxiety both immediately and well into the future. And with more than one in five adults and more than one in three young adults living with a mental illness in the U.S., addressing loneliness and isolation is crucial to fully addressing America’s mental health crisis, says the advisory. 

The advisory notes that while the epidemic of loneliness and isolation is widespread and has profound consequences for our individual and collective health and well-being of the nation, there is a simple way to attack this societal problem: social connection.

Social connection is beneficial for individual health and also improves the resilience of the nation’s communities. Evidence shows that increased connection can help reduce the risk of serious health conditions such as heart disease, stroke, dementia, and depression. Communities where residents are more connected with one another fare better on several measures of population health, community safety, community resilience when natural disasters strike, prosperity, and civic engagement.

Six pillars to advance social connection

This Surgeon General’s Advisory lays out a broad framework for the United States to establish a National Strategy to Advance Social Connection based on six pillars.

Pillar one calls for strengthening social infrastructure (parks, libraries, and playground) and the programs and policies in place.

The second pillar urges government at all levels to create “Pro-Connection” public policies like accessible public transportation or paid family leave to foster more connections in the family and community.  

Because loneliness and isolation are risk factors for patients with heart conditions, dementia and depression, the third pillar calls for utilizing heath care providers to assess and identify patients for risk of loneliness and intervene.

Pillar four calls for critically evaluating our relationship with technology to ensure that how we interact digitally with others doesn’t reduce meaning and healing personal connections with others.

More research is needed to study the impact of loneliness and isolation, beyond the evidence outlined in the advisory.  Pillar five calls for the deepening of our knowledge to understand the causes and consequences of social disconnection, populations at risk, and effectiveness of efforts to boost connections.

Finally, pillar six notes the importance of cultivating a culture of connection to influence the relationships of people we have in our daily lives. 

This week in an RINewsToday article on combined loneliness – and grief – Dr. Mari Nardolillo Dias noted the compounding risk for individuals. Dias says, “Grief and loneliness are common, albeit toxic, bedfellows,” and she suggests building in small activities to look forward to which she says gives us “hope” for the future. (https://rinewstoday.com/griefspeak-choose-hope-mari-nardolillo-dias/)

Social engagement can help maintain good brain health 

For years, researchers involved in the publishing of 13 Global Council on Brain Health (GCBH) reports on various brain health topics including the impact of social isolation and loneliness. “We’re thrilled that the Surgeon General is focusing new attention and energy on this critical topic,” says  Sarah Lenz Lock, senior vice president of policy and brain health at AARP, also serving as GCBH’s executive director.

Both the GCBH reports and the Surgeon General’s advisory talk about the importance of social connections to health, says Lock. “The GCBH focused on how critical social engagement was to maintaining good brain health as you aged beginning in 2016, while the Surgeon General report in 2023 talked about all ages and health conditions, and followed the extreme social isolation brought about the pandemic that occurred afterwards,” she notes.  

According to Lock, the pandemic was a forced natural experiment that demonstrated the harm of loneliness and isolation which is what we had being saying long before.  But now we can see it in even more stark terms [after the pandemic],” she adds.

Lock sees the Surgeon General’s efforts to create a National Strategy to Advance Social Connections to be an extremely important initiative. “People of all ages need to take steps to stay connected with others for their health and mental well-being.  It’s not just a “nice to have’ this kind of project, it’s a critical need to have for the health and well-being of our nation,” she says. 

While there is no federal funding allocated to fund implementation of the advisory’s recommendations, a divided Congress might just be able to come together to address the personal and societal problems caused by loneliness and isolation. “This is an issue that affects both parties and we hope that it is viewed as a bi-partisan issue. Further, the healing power of social connection goes beyond individual health. The more communities, society, and leaders, can feel connected the more we can trust and rely upon one another and tackle many of the issues that we face as a nation,” adds Holt-Lunstad.

During this session of Congress, the Surgeon General’s advisory should be put placed on its policy agenda to hammer out new laws to enhance the nation’s social connections.  In concluding the advisory’s letter from the Surgeon General, Murthy warns:  “If we fail to do so, we will pay an ever-increasing price in the form of our individual and collective well-being. And we will continue to splinter and divide until we can no longer stand as a community or country.”

For a copy of the Surgeon General’s advisory, go to: https://www.hhs.gov/sites/default/files/surgeon-general-social-connection-advisory.pdf

GCBH has published 13 reports on various brain health topics. All of them can be found here: https://www.aarp.org/health/brain-health/global-council-on-brain-health/resource-library/. 

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Tips on Connecting with Others

Below are recommendations to optimize and promote social engagement from the GCBH report. The recommendations are ordered so that the first ones might be appropriate for people who have very few social connections. This is followed by suggestions for those who are relatively socially active. The final recommendations are for those people who are already socially active. The GCBH also recommends that these people consider increasing the diversity or variety of their engagement. It is recommended that people should generally maintain a variety of the suggested types of engagements.

To promote meaningful social engagement:

1. Focus on the relationships or social activities you enjoy the most.

2. If you have no one around who can help you engage socially, turn to professionals who can assist. a. Examples: telephone hotlines, drop-in centers, a chat with a local religious leader, etc.

3. If you feel lonely, you can try to change this by making a new connection or by seeking different opportunities to engage with others.

4. If there are barriers to interacting with people (e.g., difficulty getting around, unsafe neighborhood), see if you can identify someone you could ask for help, and let someone assist you in making connections.

5. Try to keep a circle of friends, family or neighbors with whom you can exchange ideas, thoughts, concerns and practical matters, and who can also help or encourage you. It does not need to be a large group of people as long as those in it are important to you and you are important to them. Try to have at least one trustworthy and reliable confidante to communicate with routinely (e.g., weekly), someone you feel you can trust, and you can count on.

6. If you are married, this can benefit your cognitive health, but you should consider fostering other important relationships. Individuals who have never married or are divorced or widowed often have many other connections that provide support.

7. Try to speak every now and then (e.g., monthly) with relatives, friends and/or neighbors; communicate in person, or by phone, email or other means.

8. Help others, whether informally or through organizations or volunteer opportunities. For example, visit a lonely neighbor or friend, shop for/with them, or try cooking together.

9. Maintain social connections with people of different ages, including younger people. Keep in touch with grandchildren or volunteer to help people at a local school or community center. Think about the skills you have and that you use routinely that might be valuable to pass on to others. Offer to help teach a younger person skills you may already have, such as cooking, organizing an event, assembling furniture, saving for the future, investing in the stock market, etc.

10. Add a new relationship or social activity you didn’t try before. Place yourself in everyday contexts where you can meet and interact with others (e.g., stores or parks).

11. Be active and challenge yourself to try out organized clubs, courses, interest groups, political organizations, religious gatherings, or cooking classes.

12. If you are already socially active, diversify your activities. Consider joining or starting a group that doesn’t exist in your community and is centered around a common interest (e.g., a workout group).

Practical tips for those who have trouble engaging socially:

1. People can take small steps to connect with others. Share a smile a day with someone, show interest in someone by asking how they are, hold a door for someone, and practice a random act of kindness.

2. Reach out to neighbors or acquaintances whom you may not have spoken to in a long time: for example, call, send a card, email, or check social media.

3. Look at the list of additional resources that we provide in Appendix 1 and consider using them.

Source:  AARP

A close look on “Facts and Figures” about Alzheimer’s

Published in RINewsToday on April 3, 2023

For over five years, Janet Bryant, 65, has been a caregiver for her 67-year-old husband, Paul, who suffers from Alzheimer’s disease. Their daughter, Alison, and husband Ryan, living in the condo above her parents, step in to assist with caregiver duties when needed. 

“It’s often a long day when you’re caring for someone with dementia,” says Janet, who handles all financial, medical and household tasks. Even when Paul helps out with a few tasks he must be closely supervised, she says. And you must be watchful. “A few weeks ago, Paul was trying to make a cup of tea, and put the metal tea kettle in the microwave, causing the handle to burst into flames. I disabled the microwave and now I make him his tea. His wife of 47 years says he can’t be left alone, and gets lost in their small condo. 

Janet acknowledges that the long day often continues into night, as Paul has trouble finding the bathroom or tries to roam around. 

Janet’s experiences as a caregiver taking care of a loved one with Alzheimer’s disease is not uncommon. The newly released Alzheimer’s Disease Facts and Figures reports that 6.7 million people aged 65 and over, like Paul, are living with Alzheimer’s or other dementias in the United States — it’s one of the costliest conditions to society and is projected to reach $345 billion, a $24 billion increase from a year ago. By 2050 these costs could rise to nearly $1 trillion.

In 2022, like Janet, more than 11 million caregivers provided unpaid care for people with Alzheimer’s or other dementias, providing an estimated 18 billion hours of unpaid assistance — a contribution valued at $339.5 billion, noted Facts and Figures.

Taking a look at Facts and Figures

The Alzheimer’s Association’s 2023 Facts and Figures report (the first released in 2007) provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. 

Alzheimer’s disease is not a normal part of aging; it’s a devastating cognitive disorder that will be the number 1 killer by 2050. This year’s Fact and Figures findings indicate that 1 in 3 seniors dies with Alzheimer’s or another dementia. This devastating disorder also kills more than breast cancer and prostate cancer, combined. Between 2000 and 2019, deaths from heart disease have decreased by 7.3% while deaths from Alzheimer’s disease have increased by 145%.  

Researchers found that while only 4 in 10 Americans talk to their physician right away when experiencing early memory or cognitive loss, 7 in 10 would want to know if they have Alzheimer’s disease if it could allow for earlier medical treatment. 

This year’s report also examines the capacity of the medical specialty workforce essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other types of dementia. The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, warn the researchers, especially with the recent FDA accelerated approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or MCI due to Alzheimer’s disease.

Caring for those living with Alzheimer’s or other dementias poses special challenges, the report noted. As dementia symptoms worsen, caregivers can experience increased emotional stress (59%), depression, anxiety, chronic stress, and new or exacerbated health problems. Additionally, caregivers often experience depleted income and finances due to disruptions in employment, and paying for health care or other services for both themselves and those with dementia.

While recent advancements in treatment of early-stage Alzheimer’s, including mild cognitive impairment (MCI) due to Alzheimer’s disease, are providing hope to millions living with memory loss and early cognitive decline, the latest Fact and Figures finds too often individuals with memory concerns, and their doctors, are not discussing the issue, missing a critical first step toward diagnosis and potential treatment.

“Providing the best possible care for Alzheimer’s disease requires conversations about memory at the earliest point of concern and a knowledgeable, accessible care team that includes physician specialists to diagnose, monitor disease progression, and treat when appropriate,” said Maria C. Carrillo, Ph.D., chief science officer of the Alzheimer’s Association, in a statement announcing the release of the 128-page report.

“For the first time in nearly two decades, there is a class of treatments emerging to treat early-stage Alzheimer’s disease. It’s more important than ever for individuals to act quickly if they have memory concerns or experience symptoms.”

An accompanying special report, The Patient Journey in an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers. Previous special reports have indicated many people believe their experiences are related to normal aging, rather than a potential diagnosable medical condition.

Taking a close look at Rhode Island

The number of people aged 65 and over with Alzheimer’s and other dementia continues to increase in Rhode Island, from 24,000 in 2020, and expected to climb to 27,000 by 2025.  That’s an estimated 12.5% increase.  Fifty-two percent of Rhode Island caregivers report having one chronic condition, 41% say they are depressed and 11% rate their health as poor. 

Currently there are 36,000 unpaid caregivers in the Ocean State providing about 51 million total hours of uncompensated care (valued at over $1.29 million).  

The cost of health care continues to skyrocket to care for those with Alzheimer’s and other dementias.  The state’s Medicaid program spends over $470 million, with the projected cost to increase by 20.1% by 2025. 

Two years ago, there were 33 practicing Geriatricians in Rhode Island. By 2050, a 48.5% increase of this medical specialty will be needed to meet the patient care demands. Three years ago, there were 7,410 Health and Personal Care Aides providing care. By 2030, an increase of direct care workers by 27.5% will be needed to provide personal care. 

Implications for Rhode Island lawmakers, state officials

Donna McGowan Executive Director of the RI Chapter of the Alzheimer’s Association expects the release of the latest Alzheimer’s Disease Facts and Figures to educate state policy makers about the impact of Alzheimer’s on their own communities and districts, specifically the number of Rhode Islanders living with Alzheimer’s or related dementia, and the number of caregivers who provide for them. 

“Further, along with personal discussions, the report will help them to understand the reality that many of their constituents are hesitant to seek a medical diagnosis, or even support it. And the report will highlight for policy makers the crisis that is the shortage of workers in the Alzheimer’s and related dementia professional caregiving field,” notes McGowan.

As the 2023 Alzheimer’s Disease Facts and Figures indicates, a growing number of caregivers have approached the Rhode Island chapter to access programs and services, says McGowan. Last fiscal year, approximately 4,600 individuals contacted the Rhode Island chapter to access programs and services which equated to an “8% overall increase over the previous fiscal year,” she said.  

According to McGowan, this year they are tracking approximately a 16% increase in individuals contacting their helpline, totaling approximately 5,336 individuals accessing programs and services. 

“With the report showing we may not have sufficient specialist capacity to deal with the projected increase in Rhode Islanders with ADRD, there is a critical need to provide Rhode Island primary care practices with the training needed to care for persons with dementia and their caregivers,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI (SACRI), who also serves on the state’s Advisory Council on Alzheimer’s Disease and Care and a member of The Care Transformation Collaborative (CTC).  Fortunately, the CTC, in partnership with the Rhode Island Department of Health, is offering such training now through the state’s Geriatric Education Center. 

“And with a projected need for close to a 30% increase in home health aides and personal care attendants, the workforce shortage will worsen dramatically if we fail to increase direct care staff wages and expand training staff to care for persons with ADRD,” warns Maigret, noting that this is why SACRI is advocating for funding to increase direct care staff wages to a minimum of $20 an hour. 

“As the prevalence of people living with dementia continues to increase in Rhode Island, the health system and long-term care continuum will be challenged by the findings highlighted in this report,” says Nancy Sutton, MS, RD, the Rhode Island Health Department’s (RIDOH) Chief, Center for Chronic Care and Disease Management. “RIDOH, the Rhode Island Alzheimer’s Disease and Related Disorders Advisory Council, and our many partners are committed to continuing efforts to educate the public on the importance of speaking to a healthcare provider about memory concerns, she said.

Sutton says, “with the support of federal funding, resources such as a Brain Health Toolkit are being developed to support health system partners in their engagement in conversation with patients and caregivers about the importance of early detection and navigating complex systems of care and community resources to support people living with dementia.”

“We know that age is a big risk factor for Alzheimer’s Disease and Related types of Dementia (ADRD),” said the RI Office of Healthy Aging (OHA) Director Maria Cimini. “As Rhode Islanders age if they or their caregivers are concerned about memory loss, we encourage them to talk to their physicians and get connected to resources through the Point, 401-462-4444 or through myoptionsri.gov to help navigate this journey.” 

At OHA, we have worked to build comfort and capacity among physicians through a recent Alzheimer’s Disease Programs Initiative (ADPI) grant with the focus of expanding the Dementia-Capable Home and Community Based Services which include outreach and education of primary care/direct service providers in identification, diagnosis, referral, and care planning process for ADRD and to provide services supportive of individuals living with dementia and their family caregivers within the statewide Aging and Disability Resource Center. OHA and its partners developed a provider resource tool to assist providers with referring patients with cognitive symptoms and family caregivers to services; and it also provides guidance to providers in conducting care planning, and billing for dementia-related services. That resource can be found here: https://oha.ri.gov/resources/oha-resource-center.

For a copy of the 2023 Alzheimer’s Disease Fact and Figures, go to: https://www.alz.org/alzheimers-dementia/facts-figures.

For a copy of the accompanying special report, The Patient Journey in an Era of New Treatments, to https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf.

The Alzheimer’s Association’s  24/7 Helpline clinicians guide callers to financial assistance programs that may help pay for respite or a needed break. Caregivers will also find programs and services offered by this organization, too. For details, go to https://www.alz.org/ri.