New Report Puts Spotlight on the Devastating impact of Alzheimer’s

Published by Woonsocket Call on March 10, 2019

It’s hot off the press. Last Tuesday, the Chicago-based Alzheimer’s Association announced the release of its long-awaited 2019 Alzheimer’s Disease Facts and Figures. The 90-page report is chock full of national and state specific statistics and again puts a spotlight on Alzheimer’s disease, often referred to as the nation’s silent epidemic. Every 65 seconds someone in the United States develops the devastating cognitive disorder. This year, an estimated 5.8 million Americans of all ages are living with Alzheimer’s and related dementia. This number includes an estimated 5.6 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.

Painting a Picture of Alzheimer’s Impact

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system. For the third consecutive year, total payments to care for individuals with Alzheimer’s or other dementias is skyrocketing, say the report’s authors. In 2018, these costs were estimated to be over $ 277 billion. This year’s costs are expected to surpass $290 billion, an increase of nearly $13 billion from last year’s figure, according to data gleaned from the latest Facts and Figure report.

Yes, the 2019 Alzheimer’s Disease Facts and Figures report is a must read for congressional staff, state lawmakers, and federal and state officials.

New findings from the report released on March 5, 2019 reveal the growing burden on 16. million caregivers providing 18.5 billion hours of care valued at over $ 234 billion to 5.8 million people with cognitive disorders. By 2050, the new Alzheimer’s Association report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care reaching over $1.1 trillion.

Between 2000 and 2017, the number of deaths from Alzheimer’s disease as recorded on death certificates has more than doubled, increasing 145 percent, while the number of deaths from the number one cause of death (heart disease) decreased 9 percent, says the new data in the 2019 Facts and Figures report. Alzheimer’s disease kills more than breast cancer and prostate cancer combined.

The latest Alzheimer’s Disease Facts and Figures report notes that 83 percent of care provided to the nation’s older adults comes from unpaid caregivers. Specifically, about one in three caregivers (34 percent) is age 65 or older. Approximately two-third are woman. Over one-third of dementia caregivers are daughters, one quarter of these individuals also care for children under age 18. Most caregivers (66 percent) live with the person with dementia in the community.

Of the total lifetime cost of caring for persons with Alzheimer’s and other dementias, 70 percent of these expenses are borne by families, either by out-of-pocket or from the value of unpaid care,” says the Alzheimer’s report.

Taking a Look at Cognitive Assessments

Although the 2019 Alzheimer’s Disease Facts and Figures provides the latest national stats on Alzheimer’s prevalence, incidence, mortality, costs of care, and impact on caregivers, it also takes a close look at awareness, attitudes, and utilization of brief cognitive assessments (obtained by asking questions, observations, input from family and friends, or short verbal or written tests given in a clinical setting), among seniors age 65 and older and primary care physicians.

Although an evaluation of cognitive functioning is a required component of the Medicare Annual Wellness Visit, the report’s findings show that only 1 in 3 seniors are aware these visits should include this assessment.

“While it’s encouraging to see that the vast majority of seniors and physicians understand the value of brief cognitive assessments, we’re still seeing a significant gap in those that actually pursue, perform or discuss these assessments during routine exams,” said Joanne Pike, Dr.P.H., chief program officer for the Alzheimer’s Association in a statement released with this report. “Early detection of cognitive decline offers numerous medical, social, emotional, financial and planning benefits, but these can only be achieved by having a conversation with doctors about any thinking or memory concerns and through routine cognitive assessments.,” says Pike.

While the Alzheimer’s report noted that 82 percent of seniors and 94 percent of physicians believe it is important to have their thinking and memory checked, the findings indicated that just 16 percent of the senior respondents say they receive regular cognitive assessments for memory or thinking issues during routine health checkups, compared with blood pressure (91 percent), cholesterol (83 percent), vaccinations (80 percent), hearing or vision (73 percent), diabetes (66 percent) and cancer (61 percent).

The report’s authors also found a very “troubling disconnect” between seniors and their primary care physicians regarding who they believe is responsible for initiating these cognitive assessments and silence from seniors in discussing their concerns.

According to the report’s nearly all physicians said the decision to assess patients for cognitive impairment is driven, in part, by reports of symptoms or requests from patients, family members and caregivers. Those who choose not to assess cognition cited a lack of symptoms or complaints from a patient (68 percent), lack of time during a patient visit (58 percent) and patient resistance (57 percent) as primary factors.

In addition, the Alzheimer’s report says most physicians welcome more information about assessments, including which tools to use (96 percent), guidance on next steps when cognitive problems are indicated (94 percent) and finally steps for implementing assessments efficiently into practice (91 percent).

The Alzheimer’s Association is working to help educate physicians on best practices for conducting brief cognitive assessments and to ensure that all seniors understand what to expect from an assessment, as well as how to navigate an Alzheimer’s diagnosis and care planning when needed,” said Pike. “As the number of individuals living with Alzheimer’s continues to increase, we need to detect the disease early and give individuals the best opportunity to plan for the future,” she says.

The survey found that while 51 percent of the older respondents are aware of changes in their cognitive abilities — including changes in their ability to think, understand or remember — only 40 percent have ever discussed these concerns with a health care provider, and fewer than 15 percent report ever having brought up cognitive concerns on their own.

Instead, 93 percent of the senior survey respondents say they trust their primary care physician to cognitive testing for thinking or memory problems if needed. Yet, 47 percent of these physicians say it is their standard protocol to assess all patients age 65 and older for cognitive impairment. But, only 26 percent of the senior’s report having a physician ever ask them if they have any concerns about their cognitive function without them bringing it up first.

“The findings indicate there are missed opportunities for seniors to discuss cognitive concerns and problems in the exam room,” said Pike. “We hope the report will encourage seniors and physicians both to be more proactive in discussing cognitive health during the Medicare Annual Wellness Visit and other routine exams,” she says.

Combating Alzheimer’s in the Ocean State

On the heels of the release of Rhode Island’s updated State Plan on Alzheimer’s Disease and Related Disorders by Lt. Governor Dan McKee on February 26th, the released 2019 Facts and Figures reinforces the need to implement the recommendations of the State Plan.

“These facts and figures truly demonstrate the public health crisis we are in both nationally and here in Rhode Island with Alzheimer’s disease,” said Donna M. McGowan, Executive Director with the Alzheimer’s Association Rhode Island Chapter. “We are projecting cases of the disease to increase by 17% in this state by 2025. Having this data helps us to understand the scope of the issue and what we need to do to address peoples’ needs long term.”

“With Medicaid costs rising almost 23% to care for someone with Alzheimer’s, caregivers and families need to be provided resources that they need. Our updated State Plan helps to provide the framework to address some of those concerns,” said McGowan. “I commend our state lawmakers for recognizing how deeply Alzheimer’s disease and related disorders affects our citizens here and for their support in trying to address it with legislation.”

Andrea Palagi, Director of Communications for Lt. Governor Dan McKee, says that there are several Alzheimer’s-related bills being consider by state law makers this year. “It’s the year for Alzheimer’s” she says.

With the newly released 2019 Alzheimer’s Disease Facts and Figures report we hopefully won’t see the state’s updated Alzheimer’s Plan sitting on a bureaucrat’s dusty book shelf.

 For a copy, go to www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf.

 

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.