Friday, August 19, 2016

Alzheimer's Forum 2016!

Alzheimer’s Forum 2016        By: Brooke. M. Westlake
Team NEVADA at the annual ALZ Forum 2016

Cathy & I headed to ALZ Forum 2016

I have never been to an Alzheimer’s forum. The first time I heard about this was through my Nevada Policy Committee Team.   I am so glad that I went to Forum in 2016! It was very educational, and I was able to connect with others that had experience with Alzheimer’s/dementia.
Team Nevada! Representing Nevada for the ALZ Forum 2016

My journey for forum all started when I happened to be on the same flight as my awesome teammate Cathy.  Cathy and I were able to spend time getting to know one another.  I got to hear her personal story about her mother and how Alzheimer's has effected her and her family.  Every time I heard a story about Alzheimer's, it reminded me of why I volunteer and do what I do for the cause.

Monday April 4th I attended the “First Timers” program for forum.  I listened to speakers, John Funderburk, The Director of Advocacy for the Alzheimer’s Association, Matthew Baumgart, and The Senior Director of Public Policy for the Alzheimer’s Association. Last but not least, the ending speaker Stephanie Vance, 25 year veteran of the Washington D.C. political scene. I enjoyed her the best.

The evening event had speaker Bob Marino, Member at large of the Alzheimer’s Impact Movement (AIM).

Nancy Nelson, Author Blue River Apple.
She is living with Alzheimer's.
“State Roll Call” was one my favorite highlights.  Each State has an individual or individuals that came up to the microphone in front of a room filled with 2,500 people. They introduce themselves, shared what their personal connection is or was with the Alzheimer's, and then provide a fact or something interesting that their State had done the prior year in regards to Alzheimer’s.
The two most memorable “State Roll Calls” were Brandon Barkwell “Brandon Barkwell, 15, has attended two Advocacy Forums. His father, Brian, was diagnosed with younger-onset Alzheimer's in his late ‘40s, when Brandon was 5.” Being a mom of a son and having experience with Alzheimer’s, my heart sank when Brandon spoke about his dad. I felt so broken for him. Later on, at forum I saw him and I had to give him a hug and commend him on for his courage.
Team Nevada-State Roll Call!

The other memorable “State Roll Call” was a gentleman around 40s or early 50s. I can not recall his name.  I believe he was representing the State of Arizona.   I can recall crying as he spoke. He was living with Alzheimer’s. He struggled with his speech and his wife was there to guide.  She pointed out the words on the paper one by one. At the end of his roll call the whole audience stood up and cheered for him.
Young Advocates Networking Group Photo.
To tie up the evening I got to have drinks with my Nevada team and then I attended the Young Advocates Networking program.  

This was great, because I got to meet individuals my age that all have or had a personal connections to Alzheimer’s.  I especially enjoyed meeting Brent Oldham, YPAAL Advocacy Chair for Lansing county @YPAALMichigan and Terry Steetman, Co-Chair /Co-Founder of YPAAL of Lansing county.  These two gentleman were also a hoot to hang out with.  I am so proud that they are both bringing awareness to Alzheimer’s
Fellow sister queen, Christine Williamson, Miss Mountain Empire, for MAO-Miss Tennessee 2016

Jessica Rothhaar, Manager, Policy and Advocacy, Alzheimer's Association of Northern California and Northern Nevada. Demonstrating the "Ask"

Tuesday April 5th was a very busy day.  Presentations were provided on this day as well as break out training “Ask” sessions. The first meeting was for AIM. AIM stands for the Alzheimer’s Impact Movement. It was put together separate from the Alzheimer’s association to support both political parties who are advocates for Alzheimer’s.  This was followed up by a General session on Capitol Hill, followed by a group lunch. We had guest speaker Charlie Cook, political analyst, commentator and publisher of The Cook Political Report.  He was very comical and I enjoyed listening to him; however my highlight from my group lunch was meeting Nancy Nelson She and I had a lovely conversation. When I asked her about her connection with Alzheimer’s she looked at me and said “I have been diagnosed with Alzheimer’s.”  Meeting her was defiantly a highlight because having an individual speak on their own experience with the disease will help break stigmas. I firmly believe that speaking out on this disease is powerful, and lots of caregivers have come forward to speak up and share their story, but the most powerful way to get the message across to the world is to have an individual who has the disease talk about it. It will break your heart, but it will also inspire you.
Pamela Brown, CNN Justice Correspondent & I
 Our afternoon was filled with our second training for “Advocacy for the Federal Ask” followed by Stat Caucuses. Then it was off to get ready for the national dinner.

Pamela Brown, CNN Justice Correspondent

National Alzheimer’s Dinner was a real delight. The Emcee was Pamela Brown, CNN’s Justice Correspondent covering law enforcement.  There were guest speakers from caregivers to individuals who shared their story in several minutes with their loved ones photo on two giant projectors in the room. These individuals brought more personal experience to the cause. Each story unique. Each background different.  I want to commend the Alzheimer’s Association for having a wide range of individuals. We had a same sex couple speak, older gentleman, younger women. The bottom line is that Alzheimer’s does not discriminate against age, sex, religion, color, or political status.
National Stage for the ALZ Dinner
Terry Steetman, Co-Chair /Co-Founder of YPAAL of Lansing county Brent Oldham, YPAAL Advocacy Chair for Lansing county & I.
 We also enjoyed Speakers: Actress and Author, Kimberly Williams-Paisley, Harry Johns, President and Chief Executive Office of the Alzheimer’s Association, Barb Meehan, Alzheimer’s Advocate, Senator Roy Blunt, Chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Joan Uronie Alzheimer’s Association National board of directors and Advisory Group Member, Beth Kallmyer, Alzheimer’s’ Association Vice President of Constituent Services, and Patrick Peyton, Alzheimer’s Impact Movement and Alzheimer’s Association Board of Directors member.
The dinner concluded with several awards. 
The Alzheimer's Association Champion Award, This award honors an individual, organization or company whose actions have promoted greater understanding of Alzheimer's disease and its effects on diagnosed individuals, families and caregivers.
The Alzheimer's Association Outstanding Advocate of the Year Award
Actress and Author, Kimberly Williams-Paisley
Award Winners' Kimberly Williams Paisley & her father
This award is presented annually to an extraordinary Alzheimer's advocate who has shown outstanding leadership. 

The Alzheimer's Impact Movement Humanitarian of the Year Award
The Humanitarian Award is an annual award bestowed upon a public official that has made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer's disease.

Wednesday April 6th- Capital Hill Day!
Senate Minority Leader, Harry Reid & I.
Meeting one with Congressman Mark Amodei's office
Meeting two with  Senator Dean Heller's office
Team Nevada! Cathy, Jacob & I waiting to go
into Amodei's office.
Team Nevada- Washington D.C. Alzheimer's forum 2016
Our last meeting with Senator Harry Reid's office was by far our most amazing ans successful meeting! He agreed to sponsor the HOPE act, and typically he does not sponsor bills. But they thing was, he understood the need. As we sat at the meeting table, Senator Reid told us about a friend of his that had passed away from Alzheimer's. He shared with us his last time seeing his friend and how sad he was that his friend did not know who he was. He understood the disease and knew that this is a national crisis. Its not a political crisis, race crisis, age crisis, man or woman crisis, its an everyone crisis as we continue to deal with the high medical costs.  We are all affected by this disease. 

Tuesday, June 28, 2016

legendary women's basketball coach,Pat Summitt,dies at 64

By Joshua Berlinger and AJ Willingham, CNN
(CNN)Pat Summitt, who built the University of Tennessee's Lady Volunteers into a perennial power on the way to becoming the winningest coach in the history of major college basketball, died Tuesday.
Her death came five years after she was diagnosed with Alzheimer's Disease. She was 64.
    Summitt battled the disease with "fierce determination just as she did with every opponent she ever faced," her son, Tyler Summitt, said.
    "Even though it's incredibly difficult to come to terms that she is no longer with us, we can all find peace in knowing she no longer carries the heavy burden of this disease," Tyler Summitt said.
    n her 38 years at Tennessee, Summitt won eight national titles and 1,098 games -- the most by any Division 1 basketball coach, male or female. Her teams made an unprecedented 31 consecutive appearances in the NCAA Tournament.
    Beyond the wins and the statistics, Summitt had a profound impact on women's college athletics.
    When she became head coach of the Lady Vols in 1974 at the age of 22 -- barely older than some of her players -- the NCAA did not even formally recognize women's basketball. Summitt had to drive the team van to road games herself.
    As the wins and the championships piled up, Summitt's astonishing achievements commanded national attention and helped usher women's basketball into the spotlight.
    "She'll be remembered as the all-time winningest D-1 basketball coach in NCAA history, but she was more than a coach to so many -- she was a hero and a mentor, especially to me, her family, her friends, her Tennessee Lady Volunteer staff and the 161 Lady Vol student-athletes she coached during her 38-year tenure," Tyler Summitt said.
    Current Lady Vols Coach Holly Warlick credited Summitt with playing a "very significant role in molding me into the person I am."
    "Pat gave me strength and courage to face anything," Warlick said. "She was driven to perfection and always remained true to her standards. That meant doing things the right way, no matter what. In my eyes, there's never been anyone better than Pat Summitt."
    Summitt's impressive coaching record earned her a spot in the Basketball Hall of Fame in 2000.
    In 2011, she announced she was diagnosed with early onset Alzheimer's, but vowed to keep coaching.
    "This is not a pity party," she said. "We're not going to sit here and feel sorry for Pat Summitt."
    She stayed on for one more year, securing the Lady Vols their 16th SEC Championship under her leadership before retiring. But she didn't step away from the sport she loved.
    She retired in 2012, eight months after her diagnosis.
    "If anyone asks, you can find me observing practice or in my office," Summitt said at the time. "Coaching is the great passion of my life, and the job to me has always been an opportunity to work with our student athletes and help them discover what they want. I will continue to make them my passion."

    More than a coach, more than a celebrity

    Although she was notoriously tough on the sidelines, Summitt's legacy extended far beyond the game.
    "We learned about what it takes to be a leader, what it takes to be a great woman, what it takes to be a great lady, what it takes to have character, what it takes to have poise," said former Lady Vol and WNBA star Tamika Catchings in 2013.
    Summitt's concern for her players extended to the classroom as well. All of the athletes she coached who completed their eligibility went on to graduate from the university.
    Summitt's success made her a legend at the University of Tennessee, even to the school's other celebrated heroes. In 2012, Tennessee alum and NFL quarterback Peyton Manning presented Summitt with the Arthur Ashe Courage Award at ESPN's ESPY Awards.
    "I just always appreciated Pat's friendship and support," Manning said Tuesday. "I was always impressed with how all of her former players spoke about her. You speak to people like Tamika Catchings or Chamique Holdsclaw, and they just talk about the role that Pat played in all their lives on and off the court. You can just tell the impact that she had on those players."
    In 2012, President Barack Obama awarded Summitt the Presidential Medal of Freedom, the nation's highest civilian honor.
    On Tuesday, he called her a patriot, a "proud Tennessean" and an unparalleled winner.
    "Her legacy, however, is measured much more by the generations of young women and men who admired Pat's intense competitiveness and character, and as a result found in themselves the confidence to practice hard, play harder, and live with courage on and off the court," Obama said.
    "For four decades, she outworked her rivals, made winning an attitude, loved her players like family, and became a role model to millions of Americans, including our two daughters," Obama said.

    Vols Nation in mourning

    Summitt remained a pillar of the University of Tennessee community and culture until her death. When news of her illness became public in 2012, "We Back Pat" became a rallying cry for thousands upon thousands of students and supporters who attended games bearing t-shirts and signs with the slogan.
    As news of her death spread, reaction began to pour in from Tennessee and around the country.
    "We have lost a legend," NCAA President Mark Emmert said Tuesday. "Pat Summitt's courage and tenacity on and off the court should be commended and emulated. Her commitment to excellence and developing young people leaves a powerful imprint on college basketball, higher education, and all individuals who have sought to excel in sports and life."
    Tennessee issued a statement calling Summit "a global icon who transcended sports and spent her entire life making a difference in other people's lives."
    "Pat was so much more than a Hall of Fame coach; she was a mother, mentor, leader, friend, humanitarian and inspiration to so many," the school said. "Her legacy will live on through the countless people she touched throughout her career."
    Numerous coaches, players and journalists also offered respects.

    Monday, June 6, 2016

    Making Alzheimer's History!

    I am thrilled! I got this email that stated that the senate has approved to put more money into Alzheimer's research! My team, the Ambassador's and the volunteers from the Alzheimer's organization are so very happy to hear this news! Our hard work is paying off!

    Dear Brooke,
    As an advocate in the fight to end Alzheimer's, you understand how critical research funding is to the Alzheimer’s Association’s commitment stop this deadly disease as soon as possible. That is why it is my great pleasure to share very encouraging news with you.
    This morning, the Senate Labor-HHS Appropriations Subcommittee informed us that they will propose our requested $400 million increase in Alzheimer’s research funding for FY2017. If approved and signed into law, this new funding would be in addition to the historic $350 million increase signed into law several months ago at the close of 2015.
    View the Association’s statement on today’s important news. 
    Thank you for all you have done to make today’s news possible. 

    Robert Egge
    Alzheimer’s Association Chief Public Policy Officer | Executive Vice President, Government Affairs

    Friday, May 20, 2016

    Beastie Boys founding member dies from Dementia

    Beastie Boys founding member John Berry dies at 52
    John Berry, the founding member of the Beastie Boys and the person who came up with the groundbreaking hip hop group's name, has died. He was 52.
    Berry died Thursday morning at a hospice in Danvers, Massachusetts.
    He suffered from frontotemporal dementia and his health had been failing for several years, his father, John Berry III, said.
    Frontotemporal dementia shrinks brain tissues and leads to changes in personality and behavior, and difficulties with language.
    "It's nice to see the outpouring of love and support for our son," Berry III said, after his son's death. "He was a tremendous son, a tremendous musician, and quite a wonderful artist."
    The Beastie Boys, who blended punk and rap, burst on the music scene in 1986 with the album "Licensed to Ill," which included hits such as "(You Gotta) Fight for the Right (to Party"), an anthem to teen angst; "Brass Monkey" and "No Sleep Till Brooklyn."
    Their success in hip-hop was notable at a time when the music form was dominated by African-American performers.
    "The group's music crossed genres and color lines, and helped bring rap to a wider audience," said Neil Portnow, president of the Recording Academy.
    But Berry had departed long before then.
    He played on the band's first EP, "Polly Wog Stew," but left the group shortly afterward.
    The band thanked Berry, calling him a formative member, when they were inducted into the Rock and Roll Hall of Fame in 2012

    Tuesday, May 10, 2016

    A Poem for Her

    Titled: Her
    By: Brooke M. Westlake-Kelley

    Her eyes were once blue like the ocean.
    Her eyes now were gray and dark.
    Her smile was once big and bright.
    Her smile now was a straight line.
    Her laugh was once full of life.
    Her laugh now did not exist.
    Her hair was once bright blonde with big curls.
    Her hair now  was silver and frail.
    Her hands were once strong. They planted flowers, played the piano, and sewed quilts.
    Her hands now were weak and could not hold a drink.
    Her body was once strong. It skied many miles in the winter and hiked many miles in the summer.
    Her body now was slow and tired.
    Her mind was once sharp. It could think on its toes. It could answer sentences and remember the daily schedule.
    Her mind now was gone. It had disappeared over the years. It could not form a sentence and it could barely say a word.
    Her soul was once full of life.
    Her soul now is resting peacefully in heaven.

    Dedicated to all of those who have lost a loved one from Alzheimer’s.
    Beverly Jean Charles 1929-2012

    Wednesday, May 4, 2016

    This video game could help doctors diagnose dementia

    By Meera Senthilingam, for CNN
    Vital Signs is a monthly program bringing viewers health stories from around the world.
    (CNN)Have you ever wanted to take to the seas on a global adventure? A new game available on smartphones worldwide from today does just that -- and could help dementia patients in the process.
    The game, called Sea Hero Quest, asks players to set sail in search of precious artifacts -- in the form of memories -- which can be collected at different locations around the world.
      As you progress through the game, scientists can use the data you generate to gain insight into your spatial navigation abilities -- one of the first skills lost at the onset of dementia.
      The aim is to get hundreds of thousands of people playing from around the world, to identify what the normal range of navigation skills are among people in general.
      Once that is established, neuroscientists could then identify further guidelines to spot dementia early.

      How big a problem is dementia?

      Despite being potentially preventable in one-third of cases, it's estimated that someone develops dementia globally every three seconds. In 2015, more than 46 million people were living with dementia worldwide, according to the World Alzheimer Report 2015.
      The condition is a collection of symptoms, such as memory loss, difficulties in thinking or problem-solving, and reduced ability to navigate, and is caused by diseases including Alzheimer's and Parkinson's.
      "Dementia is increasingly becoming one of the greatest medical challenges we face globally," says Hilary Evans, Chief Executive of Alzheimer's Research UK.
      "It is a disease you can's not an inevitable part of ageing."
      Despite the high numbers affected, an accurate test for the condition remains unavailable. But this could be about to change -- depending on the popularity of Sea Hero Quest.
      "[The game] can tell us: 'How do people get lost?' says Hugo Spiers, a neuroscientist atUniversity College London (UCL), who is leading the research stemming from the game's data.
      "Fundamentally people with dementia -- Alzheimer's dementia -- struggle to navigate and on a scientific level we don't know enough of how people navigate to help really pin down what's going wrong," he said.

      The need for global data

      The team want at least 100,000 people to play the game by the end of 2016 to provide the ideal range of data needed to provide this missing information. Data will be anonymous and only available to researchers at UCL.
      "Step one is establishing this live database of how do people navigate...that gives us the tool to develop that diagnostic," said Spiers.
      The team imagine a future scenario in which people suffering from dementia can be identified early -- by playing the game -- and trialed on relevant drugs to stop the disease taking full hold of their mind.
      "You could give them [the game] and monitor if the drug is effective in a really powerful way," added Spiers.

      Next step: Brain imaging

      In the next stages of the project, Spiers would like to have volunteers play the game while having their brain scanned in order to see which parts of are active, and link this to patterns seen in the population worldwide.
      "I hope to collect neuroimaging data from people playing this game to really understand how the circuits are activated as people play the game," says Spiers.
      This is not the first use of mobile games to crowdsource data for scientists. Cancer Research UK have launched five games to date, including Play to Cure: Genes in Space in 2014, which obtained data as people traveled through space and helped identify codes and patterns along their way -- unwittingly.
      This time, as players travel the seas instead of space, their navigation choices and strategies will be the data of use as they're set new and changing challenges to test their true abilities.
      Sea hero quest, available on iOS and Android from May 4, was created in a collaboration between Deutsche Telecom, Alzheimer's Research UK, Scientists from University College London and the University of East Anglia and game designers Glitchers.

      Thursday, April 28, 2016

      Too Soon to Forget

      I met this awesome couple at Hilarity for Charity 2015
      By Rita Pyrillis for Work Force

      The first time Ken Dodson got lost, his wife Nikki chalked it up to stress. Ken Dodson, who was 28 at the time, was a supervisor at a Michigan steel company and often worked 12-hour days back in 2008, so getting a little turned around on his way home from the store didn’t seem like a big deal. But when it happened again on his way to pick up their daughter from school, Nikki Dodson’s gut told her that something was wrong — really wrong.
      At work, Ken Dodson noticed that he tired easily and kept forgetting safety protocols that he knew by rote.
      “I was having trouble doing things I did all the time,” Ken Dodson said in a recent Workforce interview, pausing a few beats after each carefully crafted sentence. “I usually never missed any time at work, but that last year, I didn’t have any energy. My mind raced to try to remember things, and it made everything worse.”
      Over the next two years, the Dodsons consulted doctors who said depression was likely the problem and prescribed antidepressants, but nothing changed. Nikki Dodson feared a brain tumor. It wasn’t until the Dodsons insisted on a brain scan that a diagnosis was confirmed. One week before his 30th birthday, Ken Dodson was diagnosed with early-onset Alzheimer’s disease.
      “I never in a million years thought Alzheimer’s, and I never thought that by the time I’m 40, I’ll be a widow with three kids at home,” Nikki said. (The average life expectancy for Alzheimer’s patients after diagnosis is eight to 10 years.) “People would say, ‘I hope you have money saved up,’ and I thought, ‘Are you kidding me? We were just starting our careers, we had just built a house, and we had just started our 401(k).’ ”
      Alzheimer’s disease is an irreversible, degenerative disorder that destroys memory and can also affect problem-solving, behavior and speech. While it’s typically considered to be a disease of old age, approximately 200,000 of the estimated 5.3 million Americans with Alzheimer’s have been diagnosed under age 65. And that workplace number is expected to grow as baby boomers age, posing a challenge to employers who risk losing talented employees unless they are willing to help caregivers and those diagnosed with the disease to stay on the job as long as possible.
      Early-onset Alzheimer’s, also known as younger-onset Alzheimer’s, can hit when someone is in their 30s or 40s, a time when families are least likely to have the financial and emotional resources to cope.
      For the Dodsons, now both 37, it meant losing their major source of income and their health insurance. Ken Dodson lost his job during a series of layoffs shortly after his diagnosis, and Nikki Dodson, a teacher, had to quit her job to become her husband’s full-time caregiver. Luckily for the Dodsons, individuals with early-onset Alzheimer’s are automatically eligible to receive expedited Social Security benefits, though the amount was a fraction of their dual income.
      “I know these are just material things, but we worked so hard to achieve them and now we have to work so hard just to make ends meet,” she said.
      Working and Caregiving
      Whether an employee has Alzheimer’s or is caring for someone with the disease, employers will feel the fallout, according to Dr. Lawrence Weinstein, chief medical officer at Humana Behavioral Health. 
      “Nearly 15 million people provide unpaid care to a person with Alzheimer’s or other dementias,” he said. “Many caregivers of people with Alzheimer’s reported making major changes to their work schedules because of caregiving responsibilities.” This includes going to work late or leaving early, taking a leave of absence, going from full time to part time or quitting, Weinstein said.
      Employers will also see higher disability costs if more workers in their 50s and early 60s suffer from cognitive impairment associated with dementia as well as lost productivity as employees struggle to manage their treatment, their finances and family demands, he said. 
      While Alzheimer’s at any age is devastating, for younger adults with families to support, it can be even more overwhelming, according to social worker Susan Frick, co-founder of Without Warning, a support group at Rush University Medical Center in Chicago for people with early-onset Alzheimer’s disease. Getting a diagnosis can be difficult because no one expects a person in their 30s or 40s to have Alzheimer’s.
       “It takes multiple doctors to see what’s going on,” she said. “Sometimes they’ll write it off as depression or, with women, as menopause. Sometimes it takes the caregiver a while, too. The person might seem more withdrawn or different, but that could be anything.”
      Frick said often the first people to notice a problem are co-workers, which makes awareness important for employers.
      “Often the workplace starts to notice the problem before the family does because it’s hard to hold it together at work,” Frick said. “Some people say they have to pull all-nighters to get the same level of work done. Anything new to the routine can become difficult. A lot of people say they try to keep it a secret but it becomes harder to do.”
      Carrie Richardson, 35, had no choice but to tell her employer that she has early-onset Alzheimer’s. In 2010, Richardson, a single mother of three living in Montgomery, Alabama, joined a federally funded study of a rare form of Alzheimer’s disease that is caused by a gene mutation. Richardson must take time off every few months to undergo rigorous cognitive testing; for a time, a nurse would show up at Richardson’s workplace to take her vitals and administer medication. Richardson, who teaches preschool, said her supervisors are supportive and give her the time off that she needs.
      While she shows no symptoms yet, Richardson, who still teaches preschool, is preparing for the inevitable. Her mother moved in with her in August to help take care of her children who are ages 15, 13 and 9, and she has insurance policies and a living will in place. She understands what lies ahead all too well. Her father, grandmother, three uncles and a cousin all died from early-onset Alzheimer’s. Richardson has two brothers — one tested positive for the genetic mutation, and the other did not.
      For now, Richardson watches for signs that the disease has progressed.
      “I’m busy with three kids so I think some of it is normal, but I don’t want to push it aside either,” she said. “I forget names of bands that I like. I forget small stuff. This morning I couldn’t find my keys, and I was asking all the kids where my keys are. I spent 30 minutes looking. I put cream in the pantry. And over the summer, we moved into a new house and one day I pulled into the driveway and my daughter said, ‘This is not our house.’ ”
      Richardson is lucky to have a supportive employer, but that’s not the case for many workers, according to Ruth Drew, director of family and information services for the Alzheimer’s Association in Chicago. Often employees who are struggling with job performance because of early-onset Alzheimer’s are afraid to ask for help or they are unaware that something is wrong, and colleagues are afraid to speak up, she said.
      “If they get fired before anyone figures out what’s going on, then they can’t take advantage of the benefits they qualify for,” she said. “I love it when the family gets a diagnosis early on because that gives them the most options to work with HR and take full advantage of the benefits available to them.”
      The association offers resources to employers to raise awareness of Alzheimer’s in the workplace to help human resources better understand the disease and develop support for employees who care for a loved one with Alzheimer’s.
      “About 15 million working Americans are caring for someone with dementia, and we don’t see it slowing down,” she said. “They may have kids in college or younger kids at home. They will be both caregivers and ones being cared for. We are seeing a tremendous impact on caregivers. Without a cure it’s really incumbent on all of us to have awareness of this disease and how it impacts caregivers.”
      But employers need to be cautious not to jump to conclusions and assume that signs of forgetfulness or cognitive lapses means someone has the disease, according to Peter Petesch, a shareholder with the law firm Littler Mendelson in Washington, D.C.
      “A lot of us should stick to our day jobs and manage performance, but when someone is aware that an employee has a diagnosis, there are certainly accommodations that can be made,” he said. “But it’s incumbent on the employee to come forward. Ask for an accommodation before it becomes a problem. The safest and most proactive approach an employer can take when an employee’s performance is deteriorating is to confront them with performance problems and determine if there is any way to get them back on track. It doesn’t involve diagnosing the employee, but it involves throwing it back to the employee to ask for accommodation.”
      While the Americans with Disabilities Act doesn’t issue a list of medical conditions that are covered, it has a general definition of disability that a person must meet to be covered. If an employee with dementia meets the criteria, they will be covered, Petesch said.
      “If the condition substantially limits life activity and impairs thinking, reasoning and a whole variety of cognitive activities,” he said, “then it almost always rises to the level of a disability under the ADA.”
      Petesch advises employers to consider accommodations like putting instructions in writing or working with the employee to set up deadline reminders on their online calendars. 
      What employers can’t afford to do is ignore the problem, Drew added.
      “The number of people impacted by Alzheimer’s is going to increase as the baby boomers age,” she said. “Any employer that does not look at the issue and is not aware that they have employees who are struggling to care for someone with Alzheimer’s is at risk for losing really talented staff. People are able to stay in the workforce longer when they have flexibility, and employers should help them find a way to do that.”
      Employee Benefits and Early-Onset Alzheimer’s
      Getting an Alzheimer’s diagnosis among those under age 65 can be difficult because the condition is relatively rare, affecting about 5 percent of Americans with the disease.
      But it’s important that employees seek a diagnosis as soon as possible to maximize the benefits available to them, said Ruth Drew, director of family and information services, at the Alzheimer’s Association in Chicago. The organization outlines the options available to those who have received a diagnosis.
      Private insurance
      • Disability insurance: Short term and long term.
      • Family and Medical Leave Act, or FMLA: Employees are allowed 12 weeks per year.
      • COBRA: Employees need to be aware that, to retain coverage past a certain point, they will need to provide the insurance company proof of disability to continue coverage until Medicare kicks in.
      Social Security Disability
      The U.S. Social Security Administration includes early-onset Alzheimer’s to the list of conditions under its Compassionate Allowance Initiative, expediting access to Social Security Disability Insurance and Supplemental Security Income eligibility. Social Security disability benefits will begin five months after an employee develops a disability. Payment should start during the sixth month of disability. Begin this application process when the employee goes on short-term disability and provide the written diagnosis to Social Security to aid in the approval process.
      Coverage will start approximately two years after the employee has been on disability.
      This program is available to employees when they start Medicare to bridge the gap in medical coverage. If the employee chooses one of the Medicare Advantage Plans, Medigap may not be available to work with their plan.
      Medicare Managed (Medicare Advantage Plans)
      Medicare has partnered with several insurance companies to provide Medicare coverage with the addition of prescription coverage.
      —Rita Pyrillis