Tag Archives for Alzheimer’s Disease

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.

 

Caregivers Taking Care of Persons with Dementia Have Unique Needs

Published in the Woonsocket Call on December 9, 2018

Being a caregiver 24/7 to a person in relatively good health is a tough job. But, caring for someone with dementia, becomes a 36 hour, say Authors Nancy L. Mace and Peter V. Rabins, in their ground-breaking book (published in 1981) on providing care for those with the devastating mental disorder.

The Washington, DC-based AARP releases survey findings last month that takes a look at this “unique subset of caregivers” who are taking care of persons with dementia and other cognitive disorders. Caregiving takes a physical, and emotional toll on these individuals, forcing them to put in longer hours providing care and making adjustments at work and in their personal relationships, says the findings of the newly released study.

The AARP online national survey (of caregivers 18 and older) takes a look at the demands on 700 caregivers taking care of persons with dementia or other forms of cognitive impairments (most often their parents), as well as 400 caregivers who were providing care for a loved one without dementia. Regardless of the situation, on average, caregivers report having been caring for their loved one for almost 3 years.

“Family caregivers take on big responsibilities that can be physically, emotionally and financially challenging. AARP’s new research shows that this can be particularly true for those caring for loved ones with dementia,” said Nancy LeaMond, AARP Chief Advocacy and Engagement Officer, in a statement released with the study report, Caring for People with Dementia: Caregivers’ Experiences. “That’s why AARP has developed resources to help family caregivers balance their own needs with the needs of their loved one,” adds LeaMond.

The AARP Study Found…

Obviously, it is time consuming to be a caregiver. The AARP Survey’s findings, released on November 30, 2018, found that 7 in 10 of those surveyed spend less time with friends and more than half spend less time with other family members because of the intensity of caregiving responsibilities While 75 percent of the survey respondents reported that caring for someone with dementia has brought about closer relationships and more meaning to their lives, the findings also indicate that caregiving experiences bring greater challenges to their lives, too.

According to the 26-page AARP report’s findings, those caring for persons with dementia (more likely a parent) spend on average 13.7 hours per week caregiving while caregivers, taking care of persons with no cognitive afflictions, spend 11.7 hours (more likely a spouse or partner or a friend or neighbor). Three in ten of the caregiver respondents (over age 35) spend over 21 hours per week caregiving, says Study’s findings.

Most of the caregiver respondents providing care to persons with dementia see the devastating disorder’s slowly progressing over time. But younger caregivers perceive that the onset of cognitive decline as suddenly happening.

About 32 percent of the caregiver respondents providing more intense caregiving to persons with dementia say managing their emotions and the demands of care (26 percent) they deliver as the biggest challenges the face.

Caregivers taking care of persons with dementia also reported negative health behaviors. They slept less (71 percent), had more anxiety (65 percent) and depression (54 percent), and spent less time on themselves and with their friends. Research studies reveal that social isolation and loneliness are linked to poorer physical and mental health outcomes.

Not only are the millions of family caregivers for those with dementia less socially connected, they are significantly more likely to put off medical care – over half (55 percent) have done so, compared to just 38 percent among the total caregiver population. However, there were positive health behaviors identified in the poll as well – 79 percent took steps to maintain or improve their brain health and 47 percent exercised more.

About 62 percent of those taking care of persons with dementia state that their intense caregiving responsibilities have led them to working different hours, leaving work early (62 percent) or take paid (53 percent) and unpaid time off (47 percent) for caregiving duties, and also worry about their finances.

But, two-thirds of all caregivers surveyed say they feel closer to their loved one, but those taking care of persons with dementia were more likely to say their relationship with their loved one over time had grown further apart (22 percent) than others. Those caregivers of persons with dementia were more likely to say the relationship with other family has been strained.

Finally, caregiver respondents say that they are receiving what they need from health care providers yet those caring for someone with dementia also have sought out more information about caregiving and from a greater variety of sources.

The AARP survey was conducted October 1-10, 2018. Data are weighted by income, gender, and age according to caregiver benchmarks obtained in Caregiving in the U.S. (2015).

Finding Caregiver Resources

AARP helps family caregivers find the information and support they need to manage their own care along with their loved one’s care. Go to http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Dementia Care Guide and the Community Resource Finder.

For more info, contact AARP Researcher G. Oscar Anderson at ganderson@aarp.org.

Senate Spending Bill Increases Research Dollars to Combat Alzheimer’s disease

Published in the Woonsocket Call on August 26, 2018

Last Wednesday evening, the US Senate overcame political gridlock by passing a 2019 fiscal “Minibus” spending bill that allocates funding for the Department of Defense; and Labor, Health and Human Services, Education, and Related Agencies (accounting for 65 percent of all discretionary spending). Within the Health and Human Services appropriation, the National Institutes of Health’s budget increased by $2 billion to $39.1 billion, a 5.4 percent increase over the agency’s current funding level.

The Labor, Health & Human Services, Education and Related Agencies Appropriations bill passed on Augusts 23 by a broad bipartisan vote of 85 to 7, the spending bill combining the Senate Appropriations Committee-passed FY 2019 Labor-HHS spending bill (S. 3158) with the text of the Senate committee-passed Defense spending bill (S. 3159). The Senate-passed appropriations bill, with both Rhode Island Senators supporting, adds an additional $425 million for Alzheimer’s research at the National Institutes of Health (NIH) for a total of $2.3 billion. The increases in Alzheimer’s funding surpasses the $2 billion research goal of the National Plan to Address Alzheimer’s Disease. If signed into law, this would mark the fourth consecutive year of historic action by the U.S. Congress to address the growing Alzheimer’s epidemic through funding research.

As to other NIH health initiatives, the 2019 fiscal spending bill also allocated $429.4 million for the BRAIN initiative to map the human brain, (a $29 million increase), and $376 million for the All of Us precision medicine study, this was $86 million more than in FY 2018.

The Senate Labor, Health and Services, and Education appropriations subcommittee first recommended the Alzheimer’s funding increases in June, with the full Senate appropriations committee later giving its support.

Bipartisan Support for Combating Alzheimer’s Disease

Ahead of the Senate floor vote, U.S. Senator Roy Blunt (Mo.), chairman of the Appropriations Subcommittee on Labor-HHS, called for increased federal dollars to invest in research to find a prevention and cure for Alzheimer’s disease. “Treating those with Alzheimer’s costs taxpayers $21 million every hour and, without a treatment or cure, will top $1.1 trillion by 2050 – about twice as much as the annual defense budget,” the Senator calculated.

Blunt warned his Senate colleagues that the nation must get serious with confronting the Alzheimer’s epidemic and finding a cure through research. The Senator stated: “Every hour, Alzheimer’s disease costs taxpayers at least $21 million. Every single hour. Someone in the United States is developing Alzheimer’s every 65 seconds,” noting that $277 billion in tax dollars are spent a year on Alzheimer’s and dementia-related care. It’s hard to talk about this without giving numbers, but numbers are not the most riveting thing, particularly when you talk about millions, or billions, or even trillions.

“What does that really mean? That really means that we’re spending basically an amount equal to half of the defense budget on Alzheimer’s and dementia-related care. Just the overwhelming impact of that, if we don’t do something differently than we’re doing right now, just because of the projected long life and demographics of the country, in 2050, which is 32 years from now, we’ll be spending, in today’s dollars, $1.1 trillion on Alzheimer’s and dementia care. $ 1.1 trillion… That’s twice the defense budget of last year, twice the defense budget. …,” says Blunt

“If we could just delay onset of Alzheimer’s, if we could figure out how to come up with something that would slow down the onset of that disease. If we could delay onset by an average of five years, we’d cut that $1.1 trillion by 42 percent, almost in half. If we could have the average person that gets Alzheimer’s, get it five years later than they are getting Alzheimer’s today, almost half, 42 percent of that $1.1 trillion would go away,” said Blunt.

Greater Investment in Alzheimer’s Funding Still Needed

With the Senate appropriations bill pumping more federal dollars into Alzheimer’s research, UsAgainstAlzheimer’s Chairman George Vradenburg issued a statement
saying: “We believe that Alzheimer’s is the second inconvenient truth of the 21st century. Alzheimer’s is the century’s most fearsome — and inevitable — health and social economic threat to the baby boom and future generations, including, in particular, to women and communities of color. Even with this strong commitment from the Senate, greater investment is still needed if we are to deliver meaningful progress in care and treatment to the six million Americans, 50 million globally, living with this disease and their more than 16 million caregivers. In addition to supporting research, we must elevate brain health as an important part of the path to a cure through regular primary care physician assessments of cognitive health — and early and accurate diagnosis of the cause of any cognitive impairment. The Concentrating on High-value Alzheimer’s Needs to Get to an End (CHANGE) Act, comprehensive legislation aimed at overcoming barriers to a faster cure for Alzheimer’s disease, does just that and we urge Congress to pass the CHANGE Act immediately.”

The Chicago-based Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) also applauded the Senate’s 2019 spending bill that puts more money into Alzheimer’s research. “Every 65 seconds someone in the U.S. develops the disease,” said Harry Johns, Alzheimer’s Association and Alzheimer’s Impact Movement (AIM) President and CEO. “But, thanks to increased NIH funding American scientists are now advancing basic disease knowledge, ways to reduce risk, new biomarkers for early diagnosis and drug targeting, and developing the needed treatments to move to clinical testing,” he says.

The Senate appropriations bill now goes to conference negotiations with the House and must be signed into law by President Donald Trump. The 2019 Fiscal Year begins October. 1.