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.
Medicare
Coverage will start approximately two years after the employee has been on disability.
Medigap
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

Thursday, April 21, 2016

Why "Remember My Photo"?

My blog "Remember My Photo" is dedicated to remembering the ones we have lost to Alzheimer's disease & Dementia along with informational content and new initiatives for volunteer work I am apart of to help raise awareness about this disease.
This disease is now the most expensive in America! Over 5 million individuals in the US have Alzheimer's or some form of Dementia.

This disease does not discriminate by color, religion, politics, sex or status.

There is still no cure, and it is estimated right now there are 35.6 million people with this disease. That number was in 2010. It's heart breaking to watch, and I know all to well first hand about this awful disease because of my beloved grandma Bev. She lost her battle on February 24, 2012 while cradled in my arms like a baby.


My Grandma Bev was diagnosed in 2000. At first the changes and forgetfulness were not that noticeable  She was still her fun loving self. Laughed at life in general. Didn't take to many things to seriously, loved to ski in the winter and hike in the summer. Maintained healthy lifestyle. Always got her hair colored because she didn't like having any grey hair. She was a independent, strong, fun loving woman whom had married three times, had one child and one grand child (me). She helped raise me. I spent all my summers with her.  She took me cloths shopping each school year. Taught me to say please and thank you. Told me how to introduce myself an shake a persons hand. She always wanted me to pick up her knack for skiing, but she knew deep down I was a pageant girl at heart. She loved to tell her friends about how hard "Brooke" worked with my jobs in the medical field as I worked my way through college.  Grandma would occasionally pay for my school books or send me some extra money for school. As I got older we saw each other at least twice a year when she traveled back and fourth to her Oregon home to her Arizona home.  We talked on the phone several times a week.

As the years progressed so did her disease. It was very hard for me to see this strong loving woman go back into a child like state.  The fist time I saw her at the memory care facility, she would smile, I would cry. She didn't know my name some of the days.. She would have moments where she did "know me", but other times would sit and smile and me. My heart broke each time I had to say goodbye. I would watch her stair at me behind a locked door in the facility because that is where she had to be due to the progression of her disease.  She was in the lock down ward of the memory care facility.
For Grandma Bev! Longest Day Ever, June 2014

Friday, March 25, 2016

Alzheimer's Forum, 2016 is Almost HERE!!!

  2016 Forum cropped.jpg
Join the Pre-Forum Conference Call
The 2016 Alzheimer’s Association Advocacy Forum is less than 2 weeks away!  Are you ready to join over 1,100 fellow advocates from around the country in Washington, DC and press Congress to make Alzheimer’s disease a national priority?
To help get you prepared, we will host a nation-wide teleconference on Thursday, March 31st from 6:00 pm to 7:00pm (Eastern). This will be your opportunity to learn about the legislative priorities you’ll be talking about with your members of Congress and what to expect at the Advocacy Forum.

We look forward to sharing this information and providing an opportunity for you to ask in-depth questions as you prepare for the Advocacy Forum. To participate in the call, dial (877) 713-9335. The Conference ID is 7783 5767. An operator will connect you to the call. We hope you can join us on March 31st and we look forward to seeing you in Washington, DC!

Tuesday, March 1, 2016

Alzheimer’s Risk: Do You Want to Know?

By Reviewed by Arefa Cassoobhoy, MD, MPH 
If a test could tell whether you’ll get Alzheimer's disease someday, would you want to know? And if so, what would you do with that knowledge?
These questions are becoming more and more important as researchers close in on tools to predict your risk of Alzheimer’s disease decades before symptoms start to appear.
“Primary care physicians, in the disease’s early stages, [eventually] could be able to say, ‘It looks like there’s a problem here’ through a blood test, a saliva test, or by looking at the retina,” says Dean Hartley, PhD, director of science initiatives for the Alzheimer’s Association. “But there’s no medical test now. It’s all in the research stage.”
For now, only genetic tests are available to the general public. They can spot genes linked to a higher risk of Alzheimer’s, such as the ApoE4 gene. But genetic tests aren't conclusive. Not everyone whose test result says they have ApoE4 will get Alzheimer's, and many people who don’t have that gene will get the disease.
And if you have the gene, there isn’t much you can do yet, aside from making lifestyle changes that may be preventive. “You can get the ApoE4 test at your doctor’s office, but I and many of my colleagues rarely offer it, because we don’t have any treatments to offer if we determine that patients are at higher risk,” says Alzheimer’s researcher Liana Apostolova, MD, a professor at the Indiana University School of Medicine.
Also, knowing your risk could come with a price. Seven years ago, Jamie Tyrone learned unexpectedly that she had two copies of the ApoE4 gene.
“I went into a deep, dark hole,” says Tyrone, 55, a former nurse who lives in San Diego. “This information was very anxiety-provoking, to the point that I was diagnosed withPTSD [post-traumatic stress disorder]. Knowing has done me harm.”

Tyrone says Alzheimer’s was not on her radar when she was tested for a variety of genetic disorders as part of a research study. Being unprepared for the news, she says, made her anxiety worse.

Eventually she learned to cope. She started to take better care of herself, exercising and improving her diet, meditating and doing brain-twisting puzzles purported to strengthen memory and focus. And she became involved with research into the disease. She founded B.A.B.E.S., Beating Alzheimer’s By Embracing Science, a non-profit that supports research into the disease and encourages people to get involved.
Tyrone wants others to learn from her experience.
“I’m choosing to heal by talking about it,” she says. “I don’t want people to go through what I went through.”

New Ways to Detect Alzheimer’s Disease

The biggest advance toward the early prediction of Alzheimer's, Hartley says, is using PET scans to show the buildup of beta amyloid plaques in the brain. The plaques are a risk factor for the disease, and in the past they could be seen only during an autopsy.
“This is an opportunity to see into the live brain,” Hartley says.
The FDA has approved PET amyloid imaging for use in some clinical trials and to help diagnose dementia patients, but not to predict the development of the disease -- at least not yet.
“PET imaging with amyloid will be the first way of approaching prediction,” Apostolova says. MRI will also be useful, she says, as will PET imaging for tau proteins, another sign of disease.
But, she continues, amyloid PET scans are expensive, not readily available, and they expose patients to radiation.
“What if there’s another way to get at the answer of who’s at risk?” she asks.
Research Apostolova led while at UCLA resulted in a simple blood test that picks up biomarkers -- or proteins in the blood -- linked to Alzheimer’s. Along with other tests, it one day may help predict the disease. She published her early findings in January in the journal Neurology.
Researchers are studying several other new tests:
  • A saliva test that identifies biomarkers linked to Alzheimer’s disease.
  • A combination of cognitive tests, MRI scans, and analysis of proteins found in cerebrospinal fluid -- fluid in the brain and spinal cord that can predict mild cognitive impairment, or thinking problems, 5 years before symptoms become apparent.
  • Measurements of the protein neurogranin, a potential Alzheimer’s biomarker found in fluid in the brain and spinal cord.
  • Tests that uncover the deterioration of your sense of smell may indicate Alzheimer’s.
  • Eye exams that can measure beta amyloid buildup.
All of these tests remain experimental, and their effectiveness remains to be seen.
“Saliva tests, blood tests, and things like that are not ready for prime time,” Hartley says.

Knowing Your Risk

If you do learn your risk of Alzheimer’s -- through a genetic test or, eventually, through one of these still-experimental tests -- what can you do with that knowledge? And how would it affect you? After all, with no viable treatments available to slow, stop, or prevent the disease -- only drugs that may improve symptoms in some people for a short time -- there’s little doctors can offer you.
“Some people would want to know so they can plan things out, such as long-term care insurance and end-of-life decisions, while others would not want to know,” says David Salmon, PhD, of the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego. “It’s a personal decision. It’s hard to say what the best advice would be.”
Salmon’s research suggests that knowing you’re at risk can have bad consequences. You're more likely to rate your memory worse and do worse on a memory test than someone with the same risk who is unaware.
“We don’t think it’s depression, but we didn’t measure anxiety and stress, so we don’t know if the disclosure increased anxiety and that it’s the anxiety that causes you to have memory problems,” Salmon says.
But other research suggests that knowing your genetic risk does not up your chances of depression, anxiety, or distress. Jason Karlawish, MD, an Alzheimer’s expert and medical ethicist at the University of Pennsylvania, has studied middle-age adults with a family history of Alzheimer’s.
If people get their mood and well-being assessed before they get tested, "they have minimal problems with mood and well-being after learning the results,” Karlawish says. “We don’t have data from persons who are older and plausibly closer in age of onset to AD.”
Karlawish is involved in a study of an experimental Alzheimer’s drug known as solanezumab. The drug, made by Eli Lilly, targets amyloid plaques and may delay the onset of cognitive decline. It is now being tested on people who don’t have Alzheimer’s symptoms but whose PET scans have shown the presence of such plaques, a potential early warning sign of the disease.
It’s among several meds that may prevent or slow Alzheimer’s from getting worse that are being studied in people long before they show symptoms.
Karlawish’s previous research suggests that that knowledge may motivate people to change their lifestyles. That’s what Tyrone eventually began to do. She has improved her diet and her exercise habits, she’s at work on a book about her experiences, and she’s become involved in Alzheimer’s research, such as studies into new medication. That’s something she highly recommends -- as does Karlawish -- for people who know they’re at risk.
“Yes, it’s partially selfish, because you’re getting something as well as giving something,” she says. “You’re at the forefront of cutting-edge research.”
But if you don’t yet know? “I would ask them, why do you really want to know this information? And can you make changes without knowing that information?” Tyrone asks. “It may be anxiety provoking. Is it really healthy to know this information or is not healthy? What are you going to do with it?”

Wednesday, February 24, 2016

We CAN Handle the Truth: The Facts on Alzheimer’s

Journalist and Alzheimer’s disease advocate Maria Shriver shares her takeaways from the WebMD and Shriver Report Snapshot: Insight into Alzheimer’s Attitudes and Behaviors.
By Maria Shriver
Special to WebMD Health News
“Denial is the worst form of the truth.”
During the time it takes for you to read this piece, try to put your denial impulse aside and take a hard look at the truth about Alzheimer’s. Because the fear that causes you to deny things – like our risk of getting this mind-blowing disease – can actually be the motivator you need to stop ignoring the facts and join me in doing something about it.
So here’s the truth: Our brand new WebMD and Shriver Report SnapshotInsight into Alzheimer’s Attitudes and Behaviors, reveals that almost all of us (96%) have heard of Alzheimer’s disease … so we can no longer deny that it exists. Nearly 4 in 5 of us know, or have known, someone that has been diagnosed with it, which tells us that the vast majority of us not only know about it, they actually have experience with someone who has had or is living with Alzheimer’s.
But even with all of that first-hand experience, we aren’t doing much about it. Although 67% of people say they would actually like to know their risk for getting Alzheimer’s disease, when offered a list of ways to do that, more than 1 in 4 say they wouldn’t do any of them. Although two-thirds acknowledge that an Alzheimer’s diagnosis would cause their family great financial harm, nearly half say they have never considered the financial implications if they, or someone in their family, were to get the disease.
We know the risks and the reality, but we are in denial and unprepared as a nation to deal with it.
Why are Americans choosing to turn off and tune out when the risk-filled, pocket-emptying truth is right in front of us? Because denial is a protective mechanism. It keeps you safe until you are ready to handle the truth.
I have been fighting on the frontlines of Alzheimer’s since my own father was diagnosed with the disease in 2003. I get denial. Like millions of others I first denied what was happening to him. Then, I got scared. But after that, I got busy. Fighting this disease gave me the drive to push through my fear and land in a place of hope.
What am I hopeful about? I am hopeful about the exciting research that is happening in labs across the globe. Some of the world’s best and brightest are looking for a cure every day, some even say they’re getting closer – as the new cover of Time magazine implies.
But until a “miracle” drug is found, let’s not deny that someone in this country gets Alzheimer’s every 67 seconds. Let’s not refuse to act because there is no cure. There is no cure for cancer and still there are millions of people fighting it every single day. We need to fight the fear our denial is protecting us from and find the hope. Hope will allow us to accept the truth – that as many as 16 million people could have this disease by 2050 – and act on it.
I am hopeful that people now understand the connection between cardiovascular health and brain health. I am hopeful about the cutting-edge research that is showing a relationship between the foods we eat and their impact on our brain. I am hopeful that people are getting the message that our brains and our bodies are connected and what is good for our bodies is also good for our brains.
I am hopeful about companies like WebMDEquinoxVimmia and so many more, that are joining us in this fight. The truth is that getting educated, getting empowered and getting engaged is the way to stop the fear and find the hope.
I am hopeful that children of Boomers who might suspect that their parents are struggling with memory will get them to a doctor earlier because they are now more aware of what Alzheimer’s is and isn’t. If you’re wondering what the early signs are, just this week, theAlzheimer’s Association listed them for you. The fact is, every day 10,000 Baby Boomers turn 65. The time you waste denying that someone you love might have Alzheimer’s is time wasted getting them into a clinical trial or getting a new drug that could slow its progression. When I speak to anyone connected to this disease, one of the biggest regrets they have is the time they spent in denial. There’s so much shame around Alzheimer’s but the truth is you can sit down and have a conversation with your spouse, your parents, your loved ones about what they would want to do if Alzheimer’s showed up at your door today. Those who plan do better.
I am excited about talking to Lauren and Seth Rogen for my Architects of Change Live series– a series that profiles individuals from all walks of life who challenge what is. Seth and Lauren have done just that. They created Hilarity for Charity, they are shining a light on caregivers, raising money and asking young people on college campuses to get involved and think about prevention so they can help their parents and grandparents.
My Grandma Bev Died February 24, 2012 after a 10 year
battle with Alzheimer's. When she was diagnosed, she
never told a soul....
And I’m hopeful that women – the economic engine of this country – will join me in this fight because the vast majority of people diagnosed with Alzheimer’s are women. In fact, as The Shriver Report first reported, a woman in her early 60s is twice as likely to develop Alzheimer’s as she is breast cancer over the remainder of her life. Which is why I am excited about the mobilization of women through The Women’s Alzheimer’s Challenge – we’re raising money to fund research on women’s brains to get the answer. And we won’t stop until we do.

In fact, I am excited about ALL of the people who are engaged in this fight – spouses, children, political leaders. I am thrilled that the federal government just increased the amount of money devoted exclusively to Alzheimer’s research. It’s still not enough.
In an election cycle where it seems like we have nothing in common, one thing we all DO have in common is that we all have brains. And I haven’t met a person who isn’t terrified of losing theirs. So let’s brainstorm.
They say the truth can set you free. The truth about what Alzheimer’s is and isn’t and what we can and cannot do can set us free as a nation. I have faith in our country, and I know we can handle the truth and be brave enough to use our fear to propel us into action.
The best way to break through denial is to challenge it. We have the facts, we have the figures. And we have the fight. Let’s go and face it together.

Friday, February 5, 2016

Are Women the Key to Unlocking Alzheimer’s?

By Reviewed by Michael W. Smith, MD
 Alzheimer's disease hit the Schafferman siblings hard. Audrey was the first. She was diagnosed at age 65, about 3 years before her younger brother Gene. Audrey died in 2007. Gene would follow 5 years later.
Gene’s daughter, Donna Shore, recalls that the disease looked a lot different in her father than it did in her aunt.
“It seemed like Aunt Audrey went a lot faster than my father did,” says Shore, 58, of Littlestown, PA. She took care of Gene. He was so spry and vibrant that he was able to continue his favorite hobby -- dancing -- until just a year before his death. The nursing home staff called him “Gene, Gene, the Dancing Machine.”
Shore is especially grateful that her dad never forgot who she was, calling her by her nickname, Sparky, right up until his death.
Audrey’s loss, by contrast, seemed crueler. The unfailingly kind and loving mother and grandmother became paranoid. She accused her daughters of stealing her glasses and her social security checks -- when she could remember who her children were.
“I would have to go to the bathroom and cry, because I wasn’t used to my mother talking to me that way,” says Robin Broyles, 62, of Baltimore, MD.
When Audrey began sneaking out of the house and started confusing a closet for the bathroom, the family made the wrenching decision to put her in a nursing home. She died 18 months later.
Though the experience of the disease is highly individual, researchers think what happened in the Schafferman family may be part of a larger pattern, one that puts women in the epicenter of the Alzheimer's epidemic.
Studies show that by age 65, women have about twice the risk of getting the condition. About 1 in 6 women will get Alzheimer's after age 65, compared to about 1 in 11 men. About two-thirds of people in the U.S. with the disease are women.
Not only are women more likely to get Alzheimer's than men, but recent studies suggest the disease does its work more swiftly in women, causing them to decline faster -- and farther -- than men do, at least in the beginning.
 Alzheimer's disease hit the Schafferman siblings hard. Audrey was the first. She was diagnosed at age 65, about 3 years before her younger brother Gene. Audrey died in 2007. Gene would follow 5 years later.
Gene’s daughter, Donna Shore, recalls that the disease looked a lot different in her father than it did in her aunt.
“It seemed like Aunt Audrey went a lot faster than my father did,” says Shore, 58, of Littlestown, PA. She took care of Gene. He was so spry and vibrant that he was able to continue his favorite hobby -- dancing -- until just a year before his death. The nursing home staff called him “Gene, Gene, the Dancing Machine.”
Shore is especially grateful that her dad never forgot who she was, calling her by her nickname, Sparky, right up until his death.
Audrey’s loss, by contrast, seemed crueler. The unfailingly kind and loving mother and grandmother became paranoid. She accused her daughters of stealing her glasses and her social security checks -- when she could remember who her children were.
“I would have to go to the bathroom and cry, because I wasn’t used to my mother talking to me that way,” says Robin Broyles, 62, of Baltimore, MD.
When Audrey began sneaking out of the house and started confusing a closet for the bathroom, the family made the wrenching decision to put her in a nursing home. She died 18 months later.
Though the experience of the disease is highly individual, researchers think what happened in the Schafferman family may be part of a larger pattern, one that puts women in the epicenter of the Alzheimer's epidemic.
Studies show that by age 65, women have about twice the risk of getting the condition. About 1 in 6 women will get Alzheimer's after age 65, compared to about 1 in 11 men. About two-thirds of people in the U.S. with the disease are women.
Not only are women more likely to get Alzheimer's than men, but recent studies suggest the disease does its work more swiftly in women, causing them to decline faster -- and farther -- than men do, at least in the beginning.
Roberta Diaz Brinton, PhD, is a neuroscientist at the University of Southern California and a leading voice for studying the disease in women. She finds it puzzling that most Alzheimer’s research has been gender-blind, when women are in the majority of people with the disease.
“With AIDS, the AIDS research community did not look across the entire spectrum of everyone who was having sexual intercourse,” Brinton says. Instead, researchers focused on gay men having unprotected sex. “Focus on the people who have the biology,” she says.

New Clues in Women

One of the biggest risk factors for Alzheimer's disease -- in men or women -- is a gene that carries instructions for a protein called apolipoprotein E, which ferries cholesterol and beta-amyloid in and out of cells. Beta-amyloid are sticky fragments of proteins that build up in the brains of people who have Alzheimer’s disease.
Inheriting just one copy of the APOE4 gene results in a two to four times greater risk of Alzheimer’s disease. Inheriting two copies raises the risk nearly 15 times.
That higher risk doesn’t appear to be shared equally by men and women. A 2014 study of more than 8,000 people found that APOE4 had a stronger effect in women. For healthy men, having one copy of the gene only slightly increased the risk of memory problems compared to other men. For women, a single copy nearly doubled their risk of the brain changes and eventual Alzheimer’s compared to other women.
Other studies have questioned whether lifestyle factors and experiences particular to women may be playing a role. Women are more likely than men to get depression, which increases the risk for Alzheimer’s disease.
Education, it turns out, has a powerful connection with brain health. The more education a person has, the lower their risk for getting Alzheimer’s, leading researchers to wonder whether knowledge and learning may build the brain up, almost like a muscle, making it harder for the disease to wear it away. Historically, women haven’t been as well-educated as men.
Exercise protects the brain from Alzheimer’s, and studies have shown that at least in the past, women haven’t been as physically active over the course of their lives as men are.
Even surgery is riskier for women.
A little confusion can be normal after general anesthesia, and most people recover from the experience with no lasting problems. But some people never quite recover, and older adults are known to be particularly vulnerable to long-term effects after surgery.
Researchers at Oregon Health & Science University found that men and women who’d been put to sleep for surgery did worse on tests of thinking and memory compared to similar adults who didn’t have surgery. But the declines were bigger and more rapid for women. Women also had more brain shrinkage on MRI scans after anesthesia than men did.
The more procedures a person had, the bigger the brain problems after surgery. And it didn’t seem to matter what anesthesia drug doctors used.

Hormones: Help or Harm?

Another major puzzle about Alzheimer's has been the role of hormones, and whetherhormone replacement therapy hurts or helps a woman’s memory as she ages.
Estrogen plays a large role in brain health. It boosts levels of a chemical that helps nerve cells talk to each other.
It also plays a role in how the brain uses the sugar glucose, its main fuel.
During the period just before menopause, when estrogen levels naturally start to fall, many women complain of problems with foggy thinking and scattered attention.
So doctors wondered whether giving hormones back to women might keep their memory sharp.
But in a large, government-funded study, use of estrogen and progesterone after menopause was found to increase the risk for Alzheimer's and other kinds of dementia. In taking a closer look at the results, though, researchers saw that most of the women in the study were getting hormones when they were well past menopause, long after the body had stopped making them naturally.
That made doctors wonder if giving the hormones closer to the time when the body had stopped making them naturally, around age 50 instead of 65, might make a difference, an idea called “the timing hypothesis.”
Several studies have now checked out that theory and come up empty.
“I’m pretty confident that the data suggest no effect. No evidence of benefit or harm. If a woman is thinking about hormone therapy for whatever reason, there are a lot of things to consider in that decision, but whether or not it’s going to make someone a little smarter or a little duller, I don’t think there’s much of an effect there,” says Victor Henderson, MD, a professor of health research and policy and neurology at Stanford.
But researchers haven’t given up on the hope that estrogen might help protect some women’s brains.
“Now, I think, the question has become more refined over time. Is there even a subset of individuals we should focus on in the critical-window period, and if so, who would that subset be?” says Sarah Janicki, MD, a neurologist at Columbia University.
Personalized medicine may make it possible. Janicki led a study that looked at the genes that tell the body how to make estrogen receptors. Estrogen receptors are docking sites on cells all over the body -- including cells in the brain -- that recognize and respond to estrogen. She found that four gene changes to those receptors were linked to a nearly doubled risk of getting Alzheimer’s.
She says figuring out why could help target women who might benefit or be harmed from hormone therapy. And because men also have estrogen receptors on their brain cells, her research could eventually help them, too.
Menopause isn’t the only time in a woman’s life when her brain goes through big changes.Pregnancy also has an impact.
During pregnancy, a woman’s brain and her baby’s get bombarded with a chemical called allopregnanolone, a brain hormone. It spurs the growth of the baby’s new brain cells and protects them from harm. In Mom, researchers think it may reduce stress.
In mice bred to have a model of Alzheimer’s disease, allopregnanolone sparked the growth of new brain cells and bulked up the brain’s white matter -- the connections that help brain cells communicate. It also reduced the amount of beta-amyloid -- those sticky protein pieces -- that clog the brains of Alzheimer’s patients. And it reversed the memory and thinking changes linked to the disease, so that Alzheimer’s mice treated with allopregnanolone performed the same on memory and thinking tests as normal mice.
It’s important to note that mice aren’t people. Drugs that look promising in animals often do little or nothing for humans.
But Brinton thinks allopregnanolone has promise. She’s testing the drug in people to determine the best dose and to try to get some clues about which patients could benefit from the medication. She won’t know if it helps their memory or thinking for 2 to 3 more years, she says.
Another drug that has shown promise, at least for some patients, is leuprolide, or Lupron. It’s already FDA-approved to treat endometriosis and shrink uterine fibroids.
In one study of more than 100 women with Alzheimer’s, those who took a weekly injection of the drug, along with the Alzheimer’s medication Aricept, saw almost no changes in their memory over the course of a year compared to women who took Aricept alone.
Lupron helps lower levels of follicle-stimulating hormone and luteinizing hormone, chemical signals that surge during menopause and stay high.
Craig Atwood, PhD, an associate professor of geriatrics at the University of Wisconsin School of Medicine, says the treatment helps the brain because it brings haywire hormones back into balance.
Atwood says they are looking at whether the elevated hormones are driving Alzheimer’s disease. Suppressing them may prevent women from aging as rapidly.
But he admits that’s just a guess. Right now, they really don’t understand how the drug might be working or what it might be doing in combination with Aricept.
Atwood and his co-researchers hope to raise more money for a larger clinical trial, one that would test the treatment in men and women.

Families Wait, and Hope

While science churns slowly on, Audrey Schafferman’s family is still struggling to cope without her.
When Audrey was 17, she married a man named Dennis Rose. After each child and grandchild was born, Audrey would proudly say, “It looks like the Roses!”
After Audrey’s death in 2007, Jaime Stone and some of her other grandchildren formed a team to raise money for research into the disease. They walk under the name Audrey’s Little Roses in the annual Walk to End Alzheimer’s, sponsored by the Alzheimer’s Association.
It’s the best way they know to honor the matriarch who took so much with her when she left them.
“We used to be a really, really, really close family. But here in the last couple of years, nobody really wants to get together,” Stone says.
Her grandmother, she says, was the glue that held them all together. “It’s been difficult.”