Tag Archives for dementia

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.

Aging in Place in Your Rhode Island Community

Published in Pawtucket Times on May 2, 2022

As the graying of the nation’s population continues, older persons are choosing to live out their remaining years remaining in their communities in their homes, whenever possible. A new just-released study of adults age 50 and older from the AP-NORC Center for Public Research and the SCAN Foundation, finds a majority of older persons would like to age in place and are confident they can access needed services that will allow them to stay at home in their community for as long as possible.  

Gathering Thoughts About Aging in Place

According to this new national study released last week, two-thirds of the respondents think their communities meet their needs for accessing services like health care, grocery stores and social opportunities. The researchers found that all types of health care services are widely perceived as easy to access in their communities, and most feel that local health care understand their needs (79%) and take their concerns seriously (79%).

But, a closer examination of the small proportion of older Americans (Blacks and Hispanics) who feel less prepared and less supported in their community raises concerns about equity in access to the resources necessary to age in place.

However, the study reported that a few respondents say they had a hard time accessing needed services because of communication obstacles like a language barrier (11%), cultural barrier (8%) or age gap (8%); issues with affordability (15%); or issues of respect for their religious (4%) or cultural (3%) background. 

Those in urban areas—and suburban areas especially—describe their communities as having more supports for aging in place than those in rural areas. Older adults in suburban areas see their communities as doing the best job with meeting needs for healthy food, internet access, and the kinds of foods they want to eat. Suburban areas are also seen as better than rural areas in particular at meeting needs for health care and social activities. Older rural Americans are less likely than those living elsewhere to use a range of services simply because they aren’t available in their area. They are less likely to feel that community services are easy to get and designed for people their age than those in urban or suburban communities as well. And they are less likely to think a variety of health care services would be easy for them to access.

Income disparities are also associated with access to critical aging services. Those with incomes of $50,000 and below are less likely than those earning more to have access to services that are in their language (73% vs. 82%), close by or easy to get to (58% vs. 65%), respectful of their religious beliefs (57% vs. 65%), or designed for people their age (53% vs. 63%). When it comes to medical services, they are also less likely to have easy access to dental care, physical therapy, pharmacies, nursing homes, and urgent care than those earning more.

Additionally, those age 65 and older generally feel more prepared and report better access to important community services than those ages 50-64.

Aging in Place in the Ocean State 

For older adults aging in place, in their own homes, is by far the preferred model, says Mary Lou Moran, Director, Pawtucket Division of Senior Services at the Leon Mathieu Senior Center. “In fact, the theme of this year’s federal observance of Older Americans Month “Age My Way” focuses specifically on this very topic. The coordination, accessibility, and connection to services and programs is critical to the successful delivery of services and is where much work needs to be done,” she says. 

Moran says that senior centers located in communities throughout the state deliver needed information and assistance to older adults on accessing the needed  services to age in place.  Social isolation, access to transportation, food and housing insecurity, economic stability, and connectivity to services, are obstacles to enabling a person to stay in the community in their homes, adds Moran.

Over the years, Rhode Island’s inadequate Medicaid rates have become major obstacles to allowing a person to stay at home. However, recent state legislation, H 7616, to recreate a Department of Healthy Aging, spearheaded by Reps Carson, Ruggiero, McLaughlin, Contvriend, Speakman, Ajello and Potter, addresses some of the challenges that service providers are facing when trying to assist individuals to age in place. Moran adds, as the number of older adults continues to grow exponentially, the time has come to fully put the needs of our elders in the fore front to enable them to age with choice, dignity and respect.

According to Maureen Maigret, policy consultant and Chair of the Aging in Community Subcommittee of the Long-Term Care Coordinating Council, “Rhode Island is fortunate to have a number of government-funded programs that help older adults to age in place.” These programs include Meals on Wheels home-delivered meals program; Medicaid home and community services including home care, adult day services; assisted living and self-directed programs; Caregiver respite and support services; Home Modification grants to help make homes accessible; and elder transportation assistance for those age 60+ for medical trips, to get to adult day.  She also mentioned the Office of Healthy Aging’s Home Cost Share program for persons age 65+ and persons underage 65 with dementia who are not Medicaid eligible with income up to 250% of the federal poverty level and the wonderful programs offered at the state’s senior centers.

However, Maigret says that for some of these services such as home care there may be wait lists due to worker shortages. (People can find out about these programs or to find out what benefits they may be entitled to by calling the POINT at 401-462-4444).

There are also private services available for almost any service needed to help people age in place if they have the financial means to pay for them,” says Maigret.  

The National Village to Village Movement Comes to Rhode Island

While some of these volunteer programs in RI may offer some type of services such as transportation, a relatively new initiative has come to Rhode Island. “The Village Common of Rhode Island (TVC) provides a variety of supports through the efforts of almost 200 trained and vetted volunteers,” says Maigret. 

Maigret says that the goal of TVC is to help older persons to stay in their own homes and connected and engaged with their community. “This “neighbor helping neighbor” model started 20 years ago in Beacon Hill Boston and now there are 300 nonprofit “villages” operating across the country. TVC supports include transportation, running errands, home visits and telephone assurance, minor home repairs and light yard work, assistance with technology, and a virtual caregiver support program. A robust weekly calendar offers virtual events, and a monthly newsletter keeps members and guests informed. All this is done with a lean 1.5 person staff, a working board of directors and almost 200 volunteers,” she notes. 

“I had heard about the “village” model some years back and supported efforts to start a “village” in Rhode Island, she says. “It amazes me that a small band of committed volunteers were able to put all the pieces in place to operationalize a “village” and to see what has been accomplished. There are now active “villages” in Providence, Barrington, Edgewood/Cranston and Westerly with almost 300 members and more “villages” are under development. One of the priority goals of the Board is to reach out to underserved neighborhoods in our urban and rural areas to listen to people and find out what is important to them and what type of “village” program might work in their area,” she says. 

“We know that transportation is a huge issue for folks living in our rural areas and that is a huge concern. And, based on findings of the 2021 RI Life Index: Older Adults in Rhode Island(from RI Blue Cross Blue Shield//Brown University School of Public Health), we know that older persons of color living in our core cities have lower perceptions of community life, access to healthcare and experience lower food security and access to technology,” adds Maigret.  

“Research on the fairly new “village” programs shows promise in fostering feelings of being connected to others and suggest older women living alone with some disability most likely to experience improved health, mobility and quality of life (https://pubmed.ncbi.nlm.nih.gov/28509628/.),” says Maigret, noting that this is an important finding as Rhode Island has such a high portion of older adults living alone.

TVC President Anne Connor (74) says she has been a member and volunteer since 2015. “That we are volunteer supported is noteworthy and having an Executive Director, Caroline Gangji, (formerly acting Executive Director at Age Friendly RI), improves our ability to serve our members”, says the retired librarian and paralegal.

As TVC founder Cy O’Neil once said, ” …you don’t create a fire house when the house is burning.”  TVC is more than services – it is the relationships we build that are key to our success, says Connor.  

For details about The Village Common Rhode Island, go to https://www.villagecommonri.org/.

For specifics programs and services offered by the Rhode Island Office of Healthy, go to  https://oha.ri.gov/.  

Controversial move by CMS limits coverage for new Alzheimer’s drug, Aduhelm 

Published in RINewsToday on April 25, 2022

Earlier this month, amid the pleas of the Alzheimer’s Association, the National Committee to Protect Social Security and Medicare, and other aging advocacy groups, the Centers for Medicare & Medicaid Services (CMS) made its final decision to limit their Medicare coverage of the controversial Alzheimer’s drug, ADUHELM® , for only those Medicare recipients participating in clinical studies overseen by the National Institutes of Health (NIH) or in other approved clinical trials.

When releasing its decision on April 7, CMS noted from the onset, the federal agency “ran a transparent, evidence-based process that incorporated more than 10,000 stakeholder comments and more than 250 peer-reviewed documents into the determination” to make its decision.

Calls for More Rigorous Studies

According to CMS, over 6 million older Americans are believed to have Alzheimer’s, and this prevalence is expected to rise to 14 million by 2060, barring effective interventions. CMS stated that effective treatments are needed, and because of the early, but promising, evidence and the immense burden of this devastating disease on the Medicare population, the agency is finalizing Medicare coverage, calling for rigorous studies approved by the U.S. Federal Drug Administration (FDA) and NIH to help answer whether this class of drugs improves health outcomes for patients.

“Science, evidence, and stakeholder input led our team of career civil servants and clinicians through this national coverage determination process. There is potential for promise with this treatment; however, there is not currently enough evidence of demonstrating improving health outcomes to say that it is reasonable and necessary for people with Medicare, which is key consideration for CMS when making national coverage determination, said Dr. Lee Fleisher, CMS Chief Medical Officer and Director of the Center for Clinical Standards and Quality, in a statement announcing CMS’s regulatory payment decision.

“In arriving at this final decision, we looked at the unique circumstances around this class of treatments and made a decision that weighed the potential for patient benefit against the significance of serious unknown factors that could lead to harm,” added Fleisher. “If a drug in this class shows evidence of clinical benefit through the traditional FDA approval process, then CMS will provide broad access and ensure the results from the rigorous trials are generalizable for people with Medicare participating in a CMS-approved study, such as a registry,” she said, noting that this decision was made to provide CMS flexibility to respond quickly to providing coverage for any new drugs in this class showing a clinical benefit. 

Biogen, a biotechnology company that manufacturers ADUHELM®m , was quick to give its opinion about CMS’s final decision about coverage of this drug. The Cambridge, Massachusetts based company charged that “this unprecedented decision effectively denies all Medicare beneficiaries access to ADUHELM®m , the first and only FDA approved therapy in a new class of Alzheimer’s drugs. It may also limit coverage for any future approved treatment in the class. These coverage restrictions, including the distinction between accelerated approval and traditional approval, have never been applied to FDA-approved medicines for other disease areas.”

When additional data from this new class of treatments become available, Biogen urged CMS to reconsider its final decision for all FDA-approved amyloid-beta targeting therapies. The company says that it is carefully considering its options and will provide updates as the company further evaluates the business impact of this decision.

Creating Unnecessary Barriers to Care 

Calling the CMS decision wrong, the Chicago-based Alzheimer’s Association expressed deep disappointment, charging that it has essentially ignored the needs of people living with Alzheimer’s disease. “CMS has created unnecessary barriers for individuals with Alzheimer’s disease. Patients with Alzheimer’s, a fatal disease, should have FDA approved treatments covered by Medicare just as those facing other diseases do,” said Harry Johns, Alzheimer’s Association chief executive officer. 

Notably, CMS has said in its decision the only way for patients to access the first approved FDA treatment targeting amyloid in those living with Alzheimer’s is to enroll in a clinical trial. While we note CMS has expanded where those clinical trials may take place, in reality this remains an unnecessary and never before imposed barrier to access an FDA-approved treatment, says Johns.

“People living with MCI, Alzheimer’s disease and other dementia deserve the same access to therapies given to those living with other conditions like cancer, heart disease and HIV/AIDS. They deserve the opportunity to assess if an FDA-approved treatment is right for them,” said Joanne Pike, Dr.P.H., Alzheimer’s Association president. “Drugs that treat people in the early stages of Alzheimer’s could mean more time for individuals to actively participate in daily life, have sustained independence and hold on to memories longer,” she said.

According to the Alzheimer’s Association, CMS has incorporated one of its recommendations into the final rule. “Importantly, CMS has decided to utilize a registry for future treatments granted full FDA approval. The Alzheimer’s Association registry will play an important role in collecting and analyzing real-world data. This registry will monitor and report clinical and safety endpoints for patients treated with FDA-approved AD therapies, including accompanying diagnostics, to track the long-term outcomes associated with these therapies in real-world settings. Similar successful registries in heart disease and cancer have enabled researchers, clinicians, health systems and payers to track the long-term performance of therapies using a large, real-world evidence dataset,” the advocacy group says. 

The Alzheimer’s Association also expressed strong concern about the immediate impact CMS’s decision will have on Alzheimer’s and dementia research and innovation. “The agency’s decision to essentially reject the Accelerated Approval Pathway for monoclonal antibodies targeting amyloid for the treatment of Alzheimer’s disease is broad overreach. Accelerated approval is a pathway created by Congress and utilized by FDA to allow for earlier approval of drugs that treat serious conditions, and that fill an unmet medical need. Alzheimer’s is a deadly disease with no survivors,” stated the advocacy group.

“The decision by CMS is a step backward for families facing Alzheimer’s disease,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “Years of increased research funding has led to more progress and innovation than ever before, but today’s decision may halt this progress as developers question if there is a pathway forward to coverage,” she said.

Calls for Reducing Cost of Medicare Part B Premiums

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare, calls on CMS to “swiftly reduce the hefty 2022 Medicare Part B premium increase ($21.60 per month), now that the agency has made its final decision to limit coverage of the controversial Alzheimer’s drug, ADUHELM®m, to patients in clinical trials.” 

“The spike in Medicare Part B premiums was partly based on the drug’s exorbitant cost (originally priced at $56,000 per year) and the potential expense of wider coverage,” says Richtman, noting that the agency is still “reviewing” Part B premiums, under previous direction from HHS Secretary Xavier Becerra. “Medicare beneficiaries struggling to pay their bills need relief from this year’s premium increase as soon as possible, warns Richtman. .

“The Aduhelm controversy highlights the urgent need for Medicare to be able to negotiate drug prices with Big Pharma. If the price of Aduhelm had been negotiated, it is unlikely that it would have impacted Medicare premiums so dramatically in the first place,”  adds Richtman, 

For a fact sheet on Medicare coverage policy for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease, visit https://www.cms.gov/newsroom/fact-sheets/medicare-coverage-policy-monoclonal-antibodies-directed-against-amyloid-treatment-alzheimers-disease.

To read the final NCD CED decision memorandum, visit https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=305.