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.

 

Congress Gears Up its Legislative Efforts in its Fight Against Age Discrimination

Published in Woonsocket Call on March 3, 2019

With the 116th Congress beginning on January 3, 2019, Congress moves quickly to protect older Americans from rampant age discrimination. It is a key reason why Americans, age 40 and over, are fired or offered buyouts (with younger persons being hired in their place) and why they can’t find work after a period of unemployment and struggle to return to the workforce.

On Valentine’s Day, U.S. Sen. Bob Casey (D-Pa.), Ranking Member of the Special Committee on Aging, with cosponsors Sens. Chuck Grassley (R-Iowa), Patrick Leahy (D-Vt.) and Susan Collins (R-Maine) re-introduced S 485, The Protecting Older Workers Against Discrimination Act (POWADA). The bill was referred to the Senate Committee on Health, Education, Labor and Pensions.

Fixing a Supreme Court Ruling

Over a decade ago, a U.S. Supreme Court ruling in Gross v. FBL Financial Services weakened the Age Discrimination in Employment Act (ADEA) by imposing a significantly higher burden of proof on older workers alleging age discrimination than is required of workers alleging other forms of workplace discrimination. As a result, workers that allege age discrimination must meet an undue legal burden not faced by workers alleging discrimination based on race, sex, national origin or religion. This sent a clear signal to employers: some age discrimination is perfectly fine.

Enacting the bipartisan POWADA bill would restore the pre-Gross standard, recognizing once again the legitimacy of so-called “mixed-motive” claims in which discrimination is a, if not the deciding, factor. It would also reaffirm that workers may use any type of admissible evidence to prove their claims.

Rep. Bobby Scott (D-Va.), Chairman of the House Committee on Education and Labor and seven original cosponsors have introduced a House companion bill, H.R. 1230. Scott’s bill should get traction in the House because it’s referred to his committee.

Rep. David Cicilline (D-R.I), who serves on the House Seniors Task Force, has requested to be added as a cosponsor. “There is no place for age discrimination in this country,” says Cicilline, when explaining his support for POWADA. With the Rhode Island congressman recently being elected to House leadership, taking the position of Chairman of Democratic Policy and Communication Committee, the bill will most certainly get attention.

Here is a sampling of organizations that are lining up to support POWADA: AARP, American Association of People with Disabilities, Leadership Conference for Civil and Human Rights, National Employment Law Project, National Employment Lawyers Association, and National Partnership for Women and Families and Paralyzed Veterans of America.

Efforts Begin in 116th Congress to Tackle Age Discrimination

“As a lawyer I worked on age discrimination cases, and I relied heavily on the ADEA to help workers fight back,” said Casey in a statement released when the bill was thrown into the legislative hopper. “More Americans are continuing to work until later in life and we must recognize and address the challenges they face. We must make clear to employers that no amount of age discrimination is acceptable, and we must strengthen antidiscrimination protections that are being eroded,” said the Pennsylvania Senator.

“The Supreme Court case involving Iowan Jack Gross affected employment discrimination litigation across the country. It’s long past time we clarify the intent of Congress to make sure people like Jack Gross don’t face discrimination due to age,” said Grassley, who served as Chair of the Senate Aging Committee from 1997-2001.

“No matter whether it is a determinative or contributing factor in an employment decision, discrimination is wrong and should be treated as such. I am proud to once again cosponsor legislation that reinforces these fundamental rights for our nation’s seniors,” says Leahy.

Adds, Senator Collins, current Chair of the Senate Aging Committee, “Older employees bring a wealth of knowledge and expertise to the workplace. Individuals who are willing and able to remain in the workforce longer can also improve their retirement security for their golden years. We should do all we can to ensure that these employees are not faced with age-related bias while doing their jobs.”

Adds, Virginia Congressman Scott, who introduced the House companion measure, “Discrimination shuts too many people out of good paying jobs. All Americans – regardless of their age – should be able to go to work every day knowing that they are protected from discrimination.”

AARP Calls for Congress to Act

“We commend these lawmakers for sponsoring this crucial legislation,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer. “Too many older workers have been victims of unfair age discrimination and are denied a fair shake in our justice system. The time for Congress to act is now.”

According to AARP, the legislation is especially needed with the graying of the nation’s workforce. By 2022, 35 percent of the U.S. workforce will be 50 or older, and workers age 65-plus are the fastest growing age group in the workforce. Three in five older workers report they have seen or experienced age discrimination in the workplace. POWADA would restore the ADE’s longstanding protections and fix the same problem under two other civil rights laws.

An AARP survey, “The Value of Experience: Age Discrimination Against Older Workers Persist,” published in 2018, found that older workers still face discrimination at their workplace.

The researchers noted that more than 9 in 10 of these older survey respondents say they see age discrimination as somewhat or very common. At work, more than 61 percent report they’ve seen or experienced age discrimination on the job, and of those concerned about losing their job in the next year, 34 percent list age discrimination as either a major or minor reason. Only 3 percent report they have made a formal complaint to a supervisor, human resource representative, another organization or a government agency.

On the job hunt, almost 44 percent) of older job applicants say they have been asked for age-related information from a potential employer.

The older AARP survey respondents would support the recently introduced POWADA, too. Nearly 59 percent strongly supported strengthening the nation’s age discrimination laws.

We need vigilance at every regulatory level and awareness and compliance in every workplace,” says AARP Rhode Island State Director Kathleen Connell. “Most workers reach a point in their lives when society wants to diminish their relevance and dismiss their knowledge and abilities by simply adding the prefix ‘older-’ to worker or employee. It’s not acceptable and can be proven to be unlawful. I would add that is can be disturbing to many others in the workplace. We all get older every day. No one – even younger workers – should be comfortable thinking it is okay to deny employment, harass or terminate someone on the basis of age.

“The problem goes beyond hiring and firing or being denied a promotion over a younger, less capable co-worker,” Connell added. “Day to day negative comments that point to age or suggest someone should just retire ‘and give someone younger a chance to advance’ also can make people feel disrespected and vulnerable. POWDA is important because it codifies the notion we all have to take this as seriously as other, more familiar, types of workplace discrimination.

“Age discrimination is a big part of AARP’s effort to ‘Disrupt Aging,’” Connell Concluded. “As promised at http://www.aarp.org/DisruptAging (and in CEO Jo Ann Jenkins’ book of the same title), AARP ‘will celebrate all those who own their age. We will hold a mirror up to the ageist beliefs around us. We will feature new ways of living and aging, and the products and solutions that make this possible. We will partner with companies and communities to create new solutions that work for all of us at any age. And we will get this story — our story — out there. It’s time to change the conversation.’

“Society as a whole needs to be a part of this change. Everyone will benefit now and when they are … older.”

Third Time’s the Charm

In 2009, the initial POWADA bill was introduced in the Senate chamber by Grassley and Sen. Harkin (D-Iowa). No action was taken. In 2015 Casey and Sen. Mark Kirk (R-Illinois) reintroduced it. Again no action was taken. Now, with the POWADA bill again being reintroduced this month, Congress now has the opportunity to make the needed legislative fix to a Supreme Court ruling to restore protections of the ADEA to older workers. Congressional action will put the brakes to an epidemic of age discrimination complaints. Those pushing for passage express the hope that “The third time is the charm.” Yes, it is finally time to pass POWADA once and for all.

Any individual who believes that they have been or are being the victim of age-related employment discrimination can call the RI Commission for Human Rights at (401) 222-2661 or visit the office at 180 Westminster Street, 3rd floor, in Providence, to talk with staff to file a complaint.

Herb Weiss, LRI’12, is a Pawtucket writer covering aging, healthcare, and medical issues. To purchase Taking Charge: Collected Stories on Aging Boldly, a collection of 79 of his weekly commentaries, go to herbweiss.com.

Butterflies Bring Comfort in Time of Grieving

Published in the Pawtucket Times on February 18, 2019

Susan feels “joy in her heart and complete happiness” whenever she sees a butterfly. A butterfly came into her life as she mourned her brother’s death in 1990. Before he died, she remembers her brother saying that he would come back as a butterfly. The 62-year-old Pawtucket resident says “he meant it” and she believes he has sent messages to her through butterflies each year for over 30 years.

She believes that butterflies that play in the garden during the late spring and summer every year could possibly be other family members (deceased husband and father) and friends that have since departed. “Most of them knew the story of the butterfly and perhaps they too wished to come back as a beautiful butterfly. I know I would love to come back as a beautiful butterfly if I had the chance,” she says.

Significance of Butterflies Brings Sign from Beyond

Looking back, Susan remembers meeting her future husband, Stephen, after the death of her first husband. She was introduced to him by her close friend, Jackie. As the three dined at an outdoor restaurant in Tiverton, Jackie quickly pointed at a beautiful monarch butterfly sitting on a purple butterfly bush not far from their table. As they gazed at the lovely sight, a text message came into Susan’s cell phone from her next-door neighbor who had sent a photo of a monarch butterfly sitting on a purple butterfly bush in Susan’s backyard in Pawtucket. Both sightings of the monarch butterfly were at the same time of day, both directed to Susan- one in Pawtucket and one in Tiverton.

“I knew what was happening here. My brother, maybe my husband and my Dad (both deceased) were telling me that Stephen is the man for me. That’s why I married him! Well, besides he’s a good man too,” said Susan.

Like Susan, Phyllis Calvey,68, a writer, speaker, educator, and storyteller, sees the significance of the butterfly and how it can bring comfort in one’s darkest hours after the death of a loved one. “It’s a book that people can pass onto someone they know who has lost a loved one,” she says.

In “The Butterfly Club: “Is That You?”’ the Bellingham, Massachusetts writer shares her inspirational true-life stories of how God can, and does, use signs to communicate His presence to “those in need.”

“My book has brought comfort to many who had not yet found the closure they were hoping for. And still, for some, the age-old question persists, “Was it a sign or just a coincidence?” Their underlying need bleeds through – I need more proof! I believe I have found “more proof” in the Butterfly Phenomenon,” she says.

When Calvey began hearing from others who crossed her path about how God used the sign of a butterfly to comfort those grieving the loss of a loved one, she began to explore these occurrences, becoming more aware of their frequency of happening. Calvey began to hear about other “sign stories”– red cardinals, dragon flies, feathers, music, flowers, and even a “divine fortune cookie,” to name a few.

The 136-page nonfiction book of inspirational stories detailing the butterfly phenomenon, brings the age-old debate up for discussion, ‘Are these signs or merely coincidences or an incidental occurrence?’ For Calvey they are not coincidental.

As a caregiver for four parents who were allowed to die in their own homes, there is always “great matters of life and death,” to deal with, says Calvey in writing her book. “Two people in the equation – one wondering if their loved one will be okay, along with the finality of facing if they truly believe there is an afterlife. And one soon to be on the other side wondering the same. Both hoping to somehow be able to communicate that answer. The Butterfly Club is the communication of their answer,” she says.

Calvey recounts a story told her by Jackie, her cousin, who attended the wake of her brother. She had met a man wearing a butterfly pin on his lapel. In conversation, he mentioned that his daughter, AnneMarie, had died of leukemia in 1997. It seems that the 17-year-old had clearly found a way to send a signal to her father that she was okay, through a butterfly. When asked about the lapel pin, he smiled and said, “Welcome to the Butterfly Club,” and then walked away.

“There wasn’t a name for this experience, but in talking to people, you learn just how many people share it,” Calvey said, thus- naming her tome “Welcome to the Butterfly Club.”

Calvey herself had shared in a butterfly encounter many years before she wrote The Butterfly Club when Danny, an 18 year-old outgoing, charismatic, loved by everyone, boy from her church community was killed by a hit-and-run driver after leaving for college only three weeks earlier. “His mother was at a point where she felt she couldn’t bear to go on,” Calvey explained. “She took a walk in the woods and sat on a fallen log wanting to bury herself in her grief, when a monarch butterfly alighted on a small stick near her feet. Danny’s mother bent down to pick it up and sensed that the butterfly would not fly away. She looked at it in her hands and described this feeling to me, that it was as if her son were speaking the words to her himself, “Mom, it’s okay. I’m alright.” “The transformation I saw in her and the healing that followed was no less than miraculous,” Calvey said. “Now, when people ask her if they could have real proof that a butterfly can be a sign from God or a loved one, she tells them people like Nancy are all the real proof I need!”

Fortune Cookies Bring Messages, Too

At a Cranston book signing event, Calvey told this writer a story from her book, describing a divine sign that came through a message from a fortune cookie, delivered in perfect timing, one that brought comfort to her and was an “undeniable message” from her deceased father that he “was okay, and with God.”

As her father was dying Calvey sensed his fear of dying and the unknown and sought to comfort him by saying “you do know that you are going to heaven.” She stressed that he had lived his whole life as an example of the Good Samaritan in the parable that Jesus told. Calling him a “Good Samaritan” she recounted all the people throughout his life that he had helped. The day after he died, Chinese food was brought in and Calvey’s mother opened a fortune cookie, receiving this message, “The Good Samaritan did not get his name through good intentions.” “The sign of the fortune cookie could not have been a more perfect communication to deliver the message to our family that our father was indeed in heaven,” Calvey explained.

Calvey has heard from readers from all over the world who found comfort in reading her book and closure by knowing a loved one can still communicate through signs across the veil by reading her book. Their shared experience is the key for those who haven’t seen their sign as of yet and, perhaps will help them learn how to recognize their own encounter.

“A sign is undeniable. It’s making the connection of the perfect timing of a loved one delivering a message to you, that constitutes the difference,” adds Calvey. “But through the years, I’ve found it never works to ask God for a sign. Signs come to you only in God’s perfect timing,” she says.

Calvey’s book details stories of people who experience universal signs. “They don’t know they are part of a club,” she says. “But they are.”

Readers can share their views or tell their own “sign story” or purchase, “The Butterfly Club: “Is That You?”’ by going to http://www.butterflyclubbook.com.

To order, go to pcalvey@hotmail.com. Or call (617) 869-2576.