DeSantis doubles down on Alzheimer’s support

In a show of support for the Alzheimer’s Association and its continued efforts to eradicate Alzheimer’s disease, Gov. Ron DeSantis made an appearance Thursday, March 14 at An Evening of Hope, a benefit hosted by the Association’s Southeast Florida Chapter in Palm Beach.

The cocktail reception, held at the Villa Fontana residence, celebrated the generous contributions of Palm Beach Gardens residents Walter and Lucille Rubin to the Alzheimer’s Association while raising nearly $20,000 for Alzheimer’s care, support and research.

Gov. Ron DeSantis (second from right) gathers with (from left) Walter Rubin, Office of Financial Regulation Commissioner Ronald Rubin, Lucille Rubin and Alzheimer’s Association Southeast Florida Chapter Executive Director Audra Afflito at Villa Fontana.

“Floridians living with Alzheimer’s deserve our support, and as long as I’m governor, they can count on it,” DeSantis said. “I’m proud to announce our administration has taken important steps to ensure our state assists these individuals in getting the care they deserve and prioritizes the advancement of research needed for this disease.”

An estimated 5.8 million Americans are currently living with Alzheimer’s, of which nearly 560,000 are Florida residents. That total makes Florida the state with the second-highest prevalence of the disease in the country.

Noting that Alzheimer’s is also the sixth-leading cause of death in the state, DeSantis announced that he has directed the Florida Department of Health to not only add Alzheimer’s and related dementias as a priority within the State Health Improvement Plan, but also to apply to be a Center of Excellence under the BOLD Infrastructure for Alzheimer’s Act to increase awareness and support for Alzheimer’s initiatives in Florida.

Department of Health Secretary Richard Prudom (center left) and Gov . Ron DeSantis join Alzheimer’s Association Florida Region Vice President of Communications Yarissa Reyes (from left) and Vice President of Public Policy Michelle Branham for An Evening of Hope.

Other event attendees included Richard Prudom, secretary of the Florida Department of Health; Dr. Margaret Pericak-Vance, director of the John P. Hussman Institute for Human Genomics; and Dr. Jeffery Vance, professor in and founding chair of the Dr. John T. Macdonald Foundation Department of Human Genetics at the University of Miami Miller School of Medicine.

Expressing her gratitude to all attendees for their continued support, Alzheimer’s Association Southeast Florida Chapter Executive Director Audra Afflito said: “We are always happy to have the chance to work with our great community partners to put on events such as this one. Our hope is that by providing much-needed care, support and education to the community, they will know that they are not alone in their struggles and that they have resources to turn to when needed.

Florida sees continued increase in Alzheimer’s prevalence, cost of care in 2019

Alzheimer’s disease is a global crisis with significant local impact. The Alzheimer’s Association “2019 Alzheimer’s Disease Facts and Figures” report provides an in-depth look at the latest statistics on Alzheimer’s prevalence, incidence, mortality, costs of care, and impact on caregivers nationally and in Florida. Here are a few of the key findings:

FACT: By 2025, just six years from now, the number of Floridians age 65 and older with Alzheimer’s dementia is estimated to reach 720,000—a 28.6 percent increase from the 560,000 age 65 and older affected in 2019.

FACT: Alzheimer’s is a fatal disease. One in three seniors die with Alzheimer’s or another dementia. It is the sixth-leading cause of death in the nation and in the state of Florida.

FACT: The progression of Alzheimer’s disease is slow and burdensome. Studies indicate that people age 65 and older survive an average of four to eight years after a diagnosis of Alzheimer’s dementia, yet some live as long as 20 years with Alzheimer’s.

FACT: More than 1.1 million Floridians provide a total of 1.29 billion hours of unpaid care for people with Alzheimer’s or other dementias. The cost of informal, unpaid care by Floridians is valued at more than $16.4 billion.

FACT: The estimated lifetime cost of care for an individual living with dementia is $350,174.

FACT: The care provided to people with Alzheimer’s disease and other dementias is wide-ranging and, in some instances, all-encompassing. Caregivers for people with dementia tend to provide more time-intensive and extensive assistance, and experience more difficulty than caregivers of individuals without dementia.

FACT: Total Medicaid payments for Floridians age 65 and older living with Alzheimer’s or other dementias is projected to total $2.6 billion in 2019. In 2025, this number is estimated to total $3.4 billion, a 31.2 percent increase from 2019 to 2025.

Full text of the 2019 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, “Alzheimer’s Detection in the Primary Care Setting: Connecting Patients with Physicians,” can be viewed at alz.org/facts. Statistics specific to the state of Florida can be viewed here.

About 2019 Alzheimer’s Disease Facts and Figures

The Alzheimer’s Association 2019 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.


Rally in Tally 2019: An advocate’s journey

Shayna Adaniel

My name is Shayna Adaniel, and at 23 years old, I am a millennial, a daughter, a sister and a “dog mom.” More specifically, though, I’m also a social worker, a program specialist at a specialized dementia facility, an Alzheimer’s Association public policy ambassador, a soon-to-be caregiver support group facilitator and a purple flower holder who hopes that, one day, we’ll all be able to hold white ones.

In my 10 years volunteering for the Alzheimer’s Association, I’ve attended 11 Walks (two in one year), countless Walk committee meetings, one leadership summit, three other state advocacy days and three (soon to be four) Alzheimer’s Impact Movement Advocacy Forums in Washington, D.C. I can say with certainty that each experience has inspired, taught and motivated me more, but none have left me as sure that we are making a difference as Rally in Tally 2019.

This year was different for many reasons, and certainly for the better. Every year the number of Rally participants grows, because the sad but true reality is that more than 5 million Americans are living with Alzheimer’s disease, and that number is only continuing to increase. Fortunately, there were more than 100 advocates from all over Florida who were willing, able and had the necessary means to travel to our state Capitol on Feb. 5-6 to meet with our representatives and discuss the following six vital state priorities for 2019:

  • Increase funding for the Ed and Ethel Moore Alzheimer’s Disease Research Program. This program provides grant funds to Florida researchers and doctors that seek to improve and enhance research programs and practices.
  • Enhance the role of the Alzheimer’s Advisory Committee. The Alzheimer’s Association supports the Committee by analyzing and providing recommendations related to state-funded efforts in disease research, clinical care, home-based and community-based programs, and the outcomes of such efforts.
  • Improve standards for dementia care and training during hurricanes. The Alzheimer’s Association seeks to offer expertise and support along with other key stakeholders in the state to ensure proper staffing exists in special needs shelters during a hurricane or other natural disaster.
  • Protect vulnerable adults from financial exploitation. The Alzheimer’s Association will advocate for legislation that protects individuals living with Alzheimer’s and other dementia from entering into financial investment decisions and other transactions that are the result of predatory behavior by outside parties.
  • Broaden outreach to diverse and underprivileged communities. The Alzheimer’s Association will seek to expand dementia-specific initiatives in underserved areas throughout the state in partnership with state agencies such as the Department of Elder Affairs.
  • Increase funding for home and community-based services and programs. The Alzheimer’s Association supports the governor’s budget recommendation for the Alzheimer’s Disease Initiative (ADI) which provides much-needed respite services for caregivers. We also support the governor’s budget recommendations for the Community Care for the Elderly Program (CCE). These funds support the 1.1 million Floridians who provide daily unpaid care for persons living with dementia.
Elected officials gather Feb. 5 on the steps of Florida’s Historic Capitol to show support for Alzheimer’s initiatives.

The two-day event began with a purple lighting ceremony on the steps of Florida’s Historic Capitol building. All advocates were in attendance, along with 14 legislators who chose to attend in solidarity, and a 6 p.m. press conference was held, where we heard from Gina Waterhouse, an individual living with Alzheimer’s; Richard Prudom, secretary of the Florida Department of Elder Affairs; Rep. Byron Donalds, of District 80 in Naples; Rep. Matt Willhite, of District 86 in Wellington; Rep. Scott Plakon, of District 29 in Longwood; as well as the newly-inaugurated Lt. Gov. Jeanette Núñez.

Following the ceremony, all attendees headed to a state dinner at a local restaurant called The Gathering, where we spent the remainder of the evening reviewing our state priorities and enjoying each other’s company, as well as the musical talents of Ryan Johnson, our youngest advocate in attendance!

Shayna Adaniel joins Jennifer Braisted and Evan Holler, public policy managers for the Southeast Florida and Central and North Florida Chapters, at The Gathering in Tallahasse.

Wednesday morning, adorned in purple sashes, we met at the Capitol Complex for more than 85 scheduled meetings with state representatives. In those meetings, we emphasized our priorities and the ways in which our elected officials could help make Florida a “dementia-capable” state, and unlike in previous years, not one person asked us who we were or why we were there. It felt as though all our hard work had begun to pay off.

Looking back over the events of that week, I can’t help but reflect on how much we have achieved since my first Rally in Tally experience three years ago. And as we continue in our efforts to raise awareness of this disease and its devastating impacts, it only becomes clearer that there is no one “face” of Alzheimer’s. We are all the faces of Alzheimer’s, and as our number continues to increase, so does our work ethic, dedication and passion towards our cause. And while I and my fellow advocates may have traveled to Tallahassee to honor our families and share our personal stories, please know that  – whomever is reading this, wherever you are – we were fighting for yours too.

When Love is Not Lost: Living with the One You Love with Alzheimer’s

Theirs starts like a classic love story—girl meets boy at the age of 15 and sweeps her off her feet. Boy joins the army and serves in Vietnam, through the years he grows his career in finance, and together with his wife, grows a family. Now, after 46 years of marriage, Bertha and Charles are writing new chapters that they hadn’t intended on drafting. Charles is living with Alzheimer’s disease.

Bertha and Charles at the 2018 Walk to End Alzheimer’s in Broward County.

At the age of 63, Charles was diagnosed with young onset Alzheimer’s. Looking back, Bertha says there were signs for years—he would call her Polo, their dog’s name, or he would leave the gas stove on. But still, Bertha was not prepared for the diagnosis when the day came.

“I remember feeling like I had been punched in the stomach,” recalls Bertha. “It was even worse when they told me there was no cure. I started sobbing uncontrollably, feeling horrible that I broke down in front of Charles. He simply looked at me, gave me a wink, and said, ‘Everything is going to be okay.’ All I could think of what this amazing man that once saved my life is not given a chance to save his own.”

Bertha continues, “This disease has no doubt changed our life, but not our love. It has changed the way we communicate and the reverse roles we now play. Being Charles’ caregiver is the most important role of my life.”

One lifeline that has helped Bertha and Charles through the diagnosis and navigating their new roles has been the many programs and services offered through the Alzheimer’s Association. In her support group, Bertha knows that she is surrounded by people who understand and identify with the unique challenges that she faces as a caregiver. They also exercise together four days a week, and see their son, daughter-in-law and grandchildren often. “We have a great support system,” says Bertha. “There is endless love and joy in our family.”

While, at times, Bertha feels like Alzheimer’s disease has robbed her of the life she was living with Charles, she knows that the love they share is unending. “I have nothing but profound respect for Charles,” says Bertha. “He is a perfectionist at everything he does, including living with Alzheimer’s. He still has the highest integrity, he’s still trustworthy and dependable. Still caring, kind and generous. His smile is infectious and can light up a room.”

Bertha and Charles will continue their love story, writing new pages as they navigate life with Alzheimer’s disease. Theirs is a story that many share—the number of Americans living with Alzheimer’s is growing, and growing fast.

An estimated 5.7 million Americans of all ages have Alzheimer’s. Today, someone in the United States develops Alzheimer’s every 65 seconds. By mid-century, someone in the United States will develop the disease every 33 seconds.

About the Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

When Love is Not Lost: Living with the One You Love with Alzheimer’s

From Caregiver to Advocate: The Road to Tallahassee

When her husband was first diagnosed with Alzheimer’s disease, 85-year-old Doris Sanders of Stuart, Florida didn’t know what it would mean to be his caregiver. For 11 long years, she watched the disease change the man she loved from a successful, kind and loving husband, father, grandfather and pastor into a man of violence, but with help from the Alzheimer’s Association, she eventually found the much-needed resources and support to care for him until he died. Now, filled with hope and determination, she is joining the fight for a cure by taking her story on the road—all the way to Tallahassee.

Doris Sanders shares her personal Alzheimer’s story at the 2018 Rally in Tally.

“Through my up-close and personal experience with Alzheimer’s, I was able to appreciate what a horrible disease it is,” Doris says. “So after Joe died, I became a volunteer, participating in the Walk to End Alzheimer’s, program presentations and public policy.”

As a public policy volunteer with the Alzheimer’s Association, Doris will travel to Florida’s Old Historic Capitol in Tallahassee on Feb. 5-6 for our annual “Rally in Tally.” There, she will join with hundreds of advocates from across the state to meet with legislators and petition them to make Alzheimer’s a legislative priority.

“It is good to feel we are making a difference.”

– Doris Sanders

More than 540,000 people aged 65 and older are living with Alzheimer’s disease in Florida, and as many as 720,000 are expected to have the disease by 2025. The cost of caring for those with Alzheimer’s and other forms of dementia is estimated to total $2.5 billion in 2018.

According to Doris, finding a cure to the disease that took her husband will not be possible without the aid of both the state and federal government.

“Because of the enormity of the problem, no solution is going to be found without complete government involvement,” she says. “It is good to feel we are making a difference.”

Compared to when her husband was first diagnosed with the disease in 2000, Doris notes that the amount of general awareness as to the impacts of Alzheimer’s has increased dramatically in the years since, adding, “I feel that the Alzheimer’s Association is largely responsible for that increase and for the support we are now receiving from the legislature.”

Doris (center right) advocates for Alzheimer’s legislation at the Alzheimer’s Association’s 2018 Advocacy Forum in Washington, D.C.

Before she found the educational programs, resources and support of the Alzheimer’s Association, Doris struggled to understand what was happening with her husband, filled with dread at the thought that there was no prevention, no effective treatment, no cure and no hope. Now, however, she sees things from a new perspective.

“There still is no prevention, no effective treatment and no cure,” she says, “but there is hope. Due to recent research, clinical trials, legislation and funding, we are beginning to see some progress. I firmly believe that, if we are diligent in continuing these efforts, we will be able to win this fight and realize our goal of a world without Alzheimer’s.”

Staff Spotlight: Amanda Harris

Amanda Harris attends the 2016 Orlando Walk to End Alzheimer’s.

At the Alzheimer’s Association, we dare to envision a world without Alzheimer’s, and we work toward that goal for a number of reasons, not the least of which being that many of our staff members have witnessed and experienced the impacts of the disease on a personal level. One of those staff members is Amanda Harris, of our Central and North Florida Chapter, and she recently shared her personal Alzheimer’s story with us, as well as a few fun facts about herself.

What is your current role with the Alzheimer’s Association?

“I am currently the development manager for Brevard and Volusia counties.”

What three words would you use to describe yourself?

“Funny, sincere, passionate.”

Name one thing that you couldn’t live without.

“I’m ashamed to say it’s probably my cell phone.”

When did you first get involved with the Association and what inspired you to do so?

Amanda’s role as caregiver to her father (above) led her to become an advocate for the Alzheimer’s Association.

“My father was diagnosed with Alzheimer’s in 2009. In 2013, after the disease had really started taking its toll on my dad, I was searching for a way to help as Alzheimer’s really makes you feel helpless. I came across the Alzheimer’s Association and saw the information regarding the Advocacy Forum. I contacted Michelle Branham, who immediately took me under her wing and trained me as an advocate. Michelle may not know it, but she changed my life and has always been my inspiration to keep going.

“From there, I was able to attend three Advocacy Forums as one of Central and North Florida’s ambassadors. Those experiences made me feel as though I was doing all I could to support my father and help others, so they may not have to go through the same thing. In 2016, my father passed away and that only made me want to work harder to find our first survivor.”

What is your favorite aspect of working with the Association?

“I don’t think I can pick just one. I absolutely love our volunteers, the communities I work in; my co-workers are the best I have ever worked with. I love that we all have a shared passion for what we do.”

What is your most memorable experience from your time with the Alzheimer’s Association?

Amanda (far left) gathers with advocates and Association staff in Washington, D.C. for the 2017 Advocacy Forum.

“All my experiences with the Association have been memorable. As an advocate, I would have to say going to Forum and meeting with our representatives. It’s a very powerful feeling to be in the Capitol meeting with these important people and really have their attention and get to tell them why I’m advocating. I was able to tell my dad’s story to people who otherwise wouldn’t know who he was. I get to carry on his story and keep him alive in mine and other people’s hearts.

“As an employee of the Association, I would have to say getting to see both of my Walks come together. Watching the promise flower ceremony and getting to know the people in both of my communities who held those flowers and why will always be special to me.”

How has working with the Association impacted your perspective on Alzheimer’s disease?

At the Alzheimer’s Association, we dare to envision a world without Alzheimer’s, and we work toward that goal for a number of reasons, not the least of which being that many of our staff members have witnessed and experienced the impacts of the disease on a personal level. One of those staff members is Amanda Harris, of our Central and North Florida Chapter, and she recently shared her personal Alzheimer’s story with us, as well as a few fun facts about herself.

“It gives me hope. As someone who very possibly could get the disease, I truly believe that we will find our first survivor. Alzheimer’s disease is brutal. I see how it has affected so many others and it only makes me want to fight harder.”

As a former caregiver, do you have any words of wisdom or encouragement for others who may be experiencing or witnessing the impacts of Alzheimer’s disease?

“Hang in there! Soak in the small miracles and enjoy the moments you have with them. Remember, there are people that want to help you, talk with you, cry with you and love you. Try not to get frustrated with them – not an easy task – and be mindful that your loved one is still in there and they need you.”

Community Caregiving: An Evening for Caregivers

Join us for an evening of educations, companionship and pampering. Connect with helpful local resources.

Presenting speakers are Dr. Octavio Santos of the Mayo Clinic and elder law attorney Joseph L. Boles, Jr.

Hosted in partnership with the Council on Aging.

RSVP required, please call at 800.272.3900.

Time
Doors open at 5 p.m.
Dinner starts at 5:30 p.m.
Program starts at 6 p.m.

Location
River House
179 Marine St.
St Augustine, FL 32084

Caregiver College – Orlando

When it comes to dementia caregiving, knowledge is power. Join us for a series of interactive educational classes to help you build your caregiver tool kit.

Come to one or come to all, but call today to RSVP as seating is limited. 800.272.3900.

Time: 5:30 p.m.-7 p.m.

Location: Dr. P. Philips Hospital

9400 Turkey Lake Rd. Orlando, FL 32819

Atrium Rooms, first floor

10 New Year’s Resolutions to Promote Brain Health

Filled with the promise of new beginnings, each new year brings hope for a fresh start and the opportunity for growth. As we turn the corner into 2019 – emboldened with a sense of resolve – there’s no better time to plan for a healthier tomorrow, and as evidence suggests that adopting a few key lifestyle habits can reduce one’s risk of cognitive decline and dementia, the Alzheimer’s Association has compiled the following list of “10 Ways to Love Your Brain” in the new year.

  1. Break a sweat. Engage in regular cardiovascular exercise that elevates your heart rate and increases blood flow to the brain and body.
  2. Hit the books. Formal education in any stage of life will help reduce your risk of cognitive decline and dementia. Take a class at a local college, learn a new language or instrument.
  3. Butt out. Evidence shows that smoking increases risk of cognitive decline. Kicking the habit can reduce that risk considerably.
  4. Follow your heart. Risk factors for cardiovascular disease and stroke – obesity, high blood pressure and diabetes – can also negatively impact your cognitive health. Take steps towards a healthier heart and your brain just might follow.
  5. Protect your brain. Brain injury can also increase the risk of cognitive decline and dementia. Remember to wear a seat belt, use a helmet when playing contact sports or riding a bike, and take precautionary measures to prevent falls.
  6. Fuel up right. Eat a healthy and balanced diet that is lower in fat and higher in vegetables and fruit to help reduce the risk of cognitive decline. Maybe try a Mediterranean or Mediterranean-DASH (Dietary Approaches to Stop Hypertension) diet, which studies have shown may contribute toward risk reduction.
  7. Catch some Zzz’s. Lack of sleep due to conditions like insomnia or sleep apnea may result in problems with memory and thinking. Try to get at least seven hours of sleep each night.
  8. Take care of your mental health. Some studies have linked a history of depression with increased risk of cognitive decline, so those experiencing symptoms of depression, anxiety or other mental health concerns should seek medical treatment. To reduce risk, find a healthy way to relieve stress, like with a new hobby or sport.
  9. Buddy up. Staying socially active may support brain health and possibly protect against cognitive decline. Join a bowling league, book club or cooking class.
  10. Stump yourself. Challenge and activate your mind. Build a piece of furniture or complete a jigsaw puzzle. Do something artistic or play a strategy game, like bridge or chess. Challenging your mind may have short and long-term benefits for your brain.