Oct 012012
 

Girls on the Gridiron – Taking the Fight Against Alzheimer’s to the Field

People who work together will win, whether it be against complex football defenses, or the problems of modern society. – Vince Lombardi

 

Blondes vs. Brunettes® creator, Sara Allen Abbott (second from right) at the Washington, D.C. game

It is officially fall and fall means football season – fans, cheerleaders, Friday night lights, afternoon tailgaters, Monday Night Football.  When we think of football – we think of the gladiators of the gridiron.  However, one of the best football games this season is being played by women across the country – and they are playing to win the battle against Alzheimer’s disease.

Two Sisters, One Dad and a Diagnosis of Alzheimer’s

Sara Allen Abbott and her sister, Kate Allen Stukenberg, are two beautiful brunettes born and bred in Texas.  Their love of football is both geographically influenced (what Texan doesn’t love football?) but also a family affair.  Their mother started the Powder Puff football game at the girls’ high school that helped raise funds for an after-prom program.  Their father, Joe, had always been a football fan cheering on his favorite team, the Houston Oilers and taking both daughters to games at the Astrodome from a young age.  Both sisters also recall fond memories of how their dad indoctrinated his daughters into “game day” by taking his girls to University of Texas games to cheer on the Longhorns, where both women are now alumnae.

Sara on her wedding day with her dad Joe who had already been diagnosed with Alzheimer’s disease.

In 2005, Sara and Kate’s dad was diagnosed with younger-onset Alzheimer’s disease.  He was only 63 years old, although Kate remembers that there were small signs of the disease several years earlier.

The Alzheimer’s Association estimates that more than 5 million Americans are diagnosed with Alzheimer’s disease today – in fact, every 68 seconds someone develops this disease.  What is perhaps a larger concern is that studies also show that 50 percent of those living with Alzheimer’s are undiagnosed.   The Alzheimer’s Association believes that early detection of Alzheimer’s disease can help families plan ahead for what can be a long caregiving journey.  They know that families, like the Allens, can be impacted emotionally and financially, so they have created an education campaign focused on early detection titled “Know  the 10 Signs: Early Detection Matters.”  

 And, although it was Sara and Kate’s dad who developed the disease, The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s released last year from the Alzheimer’s Association shows that 10 million American women are touched by Alzheimer’s disease and other dementias.  Of the more than 5 million Americans diagnosed with Alzheimer’s disease, two-thirds are women.  In addition, 6.7 million women represent 60 percent of the family caregivers of those living with the disease.

After his diagnosis, Kate moved back to Texas from New York City and did not work for eight months so she could just hang out with her dad.  She feels this period of her life truly taught her about patience.  Although he was physically in good shape, Kate felt so much of him was missing – although she said “the core of him was still there.”

She told me, “People need to understand that being a caregiver doesn’t necessarily mean you’re changing diapers or feeding someone.  It can just be sharing time and for someone with Alzheimer’s, maybe listening to a story they feel they’re telling for the first time but you’ve heard quite a few times already.”

During this period, Sara was living in Washington, D.C. and felt the typical helplessness of being a long-distance caregiver, something that 8 million Americans are doing today.  At one point she said she was thinking of moving home but her dad said, “You can come back, but you being here is not going to cure me.  Stay in Washington and do your best.”

It was that conversation that she believes inspired her to do something to fight Alzheimer’s disease.

Blondes v. Brunettes® – Let the Games Begin

Kate Allen Stukenberg (second from right) brings Blondes vs. Brunettes® to Houston.

The age-old hair color competition (blonde or brunette?) helped fuel Sara’s idea to raise funds for the Alzheimer’s Association through a very non-traditional event.  In 2005, Sara approached the Alzheimer’s Association with the idea of tackling Alzheimer’s in a new venue – on the football field with all female players.  The first flag football game, Blondes vs. Brunettes®, was played in Washington, D.C. and a winning event was born.

It took Sara’s sister, Kate, only six months to take a page out of Sara’s playbook and host her own Blondes vs. Brunettes® game in her Houston community.  In its seven-year history, the Blondes vs Brunettes® games have raised over $3 million for Alzheimer’s research and programs.  The events now span from coast-to-coast, with more than 25 cities set to host a game in 2013. To find local events this fall, visit the Alzheimer’s Association Website (www.alz.org).

And, to prove they are democratic, Sara and Kate have invited men to serve as coaches, umpires, announcers and even cheerleaders.

Caregiving Game Changers

When I asked the sisters about their motivation for starting their fabulous female football games, Sara said, “There were three reasons.  First, my dad and I had a great love of football and wonderful memories attending games together.  Second, the fitness aspects promote health and wellness and are another way to ‘maintain your brain.’  Third, we knew in order to be successful it needed to be fun and football is a game you can enjoy on the field or from the sidelines.”

Kate believes you don’t have to love football to love the game, “I still have NO idea what a flag means.  I understand touchdowns but that’s about it.  I definitely know how to enjoy the social aspects of the game.  When Sara started it in D.C., I said ‘We have to do this in Texas.’”

When I asked the sisters what they felt their dad would say about their fund-raising and awareness-raising success, they both replied he would be proud but then they shine the spotlight back on their beloved dad.

Sara said, “He was constantly telling us we could and would do amazing things.”

Kate replied that she runs into people all the time who tell her how much he wanted to help people, what a character he was and what a difference he made.

Now it’s the sisters making a difference.  And, what a beautiful legacy of their dad that his girls are doing “amazing things” by honoring his love for the game.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

 

 

Sep 182012
 

To support causes near to her heart, jewelry designer Holly Freeman started a line of limited edition pieces with friend and actress Jamie-Lynn Sigler.  In honor of World Alzheimer’s Month, the two philanthropists designed a purple bracelet. Proceeds go to the Alzheimer’s Association. 

Alzheimer’s has touched so many.  I know firsthand.

 My grandfather was an incredibly talented artist. His works spanned from beautiful flowers and landscapes, to drawings of my favorite cartoon characters he made just for me and my friends. His mind was as precise and colorful as the paintings and drawings he created.

 But Alzheimer’s changed that. The details and precision that had always been a hallmark of his art started to shift. There were inaccuracies—the first sign to me that his health, and more specifically his mind, were declining. 

 As we spent time together while I attended college near his home, the changes became more and more painful to watch. Alzheimer’s was slowly taking him away – and more than anything, I wanted to be able stop this devastating disease.

 There were good days when Poppy would turn and look at me with a half smile when I called his name or squeeze my hand when we were sitting together. These moments were small gifts – moments of recognition.  But as the disease progressed, there came a point when my grandfather didn’t recognize me at all.

 I don’t want any other granddaughters to lose their grandfathers to Alzheimer’s disease. That’s what is driving me to help fund research, programs and care for people dealing with this disease. I’m taking action not only for the sake of the individuals suffering, but also to spare their loved ones the pain of simultaneously living through this disease.

 Back when my grandfather was diagnosed, we didn’t have such easy access to information. People weren’t on the Internet sharing their stories.  But today, we have the opportunity to come together and support one another. And we each have the opportunity to take action.

 Friday September 21 is Alzheimer’s Action Day. If we each choose to do something – even if it is as small as talking openly about Alzheimer’s – we can raise awareness, get more funding for treatments, and move closer to a future where our children won’t see their grandparents, their parents or anyone else slowly be taken by this disease.

Learn More:

This blog was first published by heart coach Amanda Daniels on her blog Voicestoshare.com.

A note from Amanda:
I met Holly five years ago in a baby group class. We immediately connected through our passion for jewelry and philanthropy. Her line, CJ Free Jewelry, is unique and timeless.  Last year Holly and her business partner, actress Jamie-Lynn Sigler, approached me about creating a red-corded bracelet in honor of my battle against heart disease.  I jumped at the opportunity to raise money and awareness for the American Heart Association. Today, Holly and Jamie are launching a new campaign with a limited edition bracelet to raise money and awareness for the Alzheimer’s Association. Alzheimer’s is an illness that is close to Holly’s heart. I’m honored to share Holly’s voice.
–     Amanda

Jul 302012
 
Photo courtesy of Kristine Walsh

Caregiving blogger Sherri Snelling spoke to actors Jill Eikenberry and Michael Tucker about their journey in caring for Jill’s mother who has dementia.  At the heart of their story is family and how “eat, pray, love” may be their new catchphrase when it comes to caregiving. 

What struck me the most when I spoke to Jill Eikenberry and Michael Tucker – her partner in marriage, career and life – was that in all things they are a team.  We even did the interview with the two of them together, at their suggestion, and it gave me a glimpse into how their special bond of support, respect and caring for each other is a recipe for all couples who face a tough caregiving situation.  In fact, their story is about love of family and food and the ingredients needed to keep it all cooking.  Jill and Mike are like salt and pepper shakers – two distinct personalities and characters – but you never pass one without the other.

We all watched them as one of our favorite TV couples in the 80s and 90s in their roles on the Emmy-winning series L.A. Law (what boomer woman can forget the famous Venus Butterfly episode?).  Since then, both Mike and Jill have thrived as solo artists – Mike as an actor and as an acclaimed author, and Jill as a continually sought-after star on stage and screen with her latest turn in the movie, Young Adult.   However, it is when they are performing together – whether it is playing the couple in Broadway’s Love Letters, or caring for Jill’s mother with dementia – that they really are at their best.

 Our House in Umbria

For many years, New York City-based Jill and Mike, have been vacationing with friends – sometimes for weeks, other times for months – in the lovely Italian countryside in the Spoleto Valley of Umbria, Italy.   This is where the couple recharges – the sumptuous food that infuses Mike’s meals, the chilled wine, the warm people, the beauty of the olive trees and the vineyards versus the urban jungle – it is their version of Cinema Paradiso.

It was on one such trip about six years ago that Jill and Mike went from the calm of their Italian reverie into the storm of caregiving.  Jill’s mom, Lora, was 87-years-old at the time and had been living in a Santa Barbara, Calif., assisted living facility for several years with her husband, Ralph.  Although Lora had been hard of hearing for more than 40 years and had been experiencing some memory lapses, she was in pretty good health for an octogenarian.  But Jill had recently grown worried.  Her mom had started having paranoid fantasies according to Ralph and she had survived a fall, which according to the Centers for Disease Control puts 2 million seniors into emergency rooms every year, and Ralph was not in good health.  Just a few days into their latest Italian sojourn, Jill and Mike got the call that Ralph had died.

“All of a sudden I felt so far away,” says Jill.  She had been anxious of leaving her mom before this trip and now the guilt washed over her for not being by her mom’s side.   As the weeks rolled by after Ralph’s funeral, Jill’s daily phone calls to her mom could no longer bridge the 3,000-mile distance.   After a few in-person visits and more falls, it became clear to Jill that her mother needed more care. But, moving her into the assisted living’s dementia care center seemed wrong.  Jill still was not sure Lora was “there yet,” Lora would be isolated from neighbors and friends and as Jill says, “It just wasn’t family.”

While at first Mike felt some resentment as his Umbrian dreams were put on hold and his concerns mounted about the toll this would take on his wife, he said, “Jill’s focus was on her mom but my eye was on Jill.  My new job was to help her do the right thing.”

 Mamma Mia!

One of the toughest decisions for caregivers, especially those 7 to 8 million long-distance caregivers of older parents, is wondering whether it is better to have them live in a special facility that can provide the care they need or move them into your home or closer to you so that you can care for them.

“My mom was calling people at all times of the night, wandering off and eventually it got to a point where she was physically attacking the nurses caring for her after a bad fall,” says Jill.  “One night we went to dinner with our son Max, and he said what I had been in denial about, ‘you have to move Lolo to New York City.’  At that moment I looked over at Mike and he just nodded and I knew this is what we had to do.”

Many caregivers of older parents, even those who are married or who have siblings who can help, often tell me they feel “all alone.”  While Jill is an only child, the secret ingredient in her caregiving situation is that she never had that feeling – she had Mike.

“It was a huge moment in that restaurant when I looked at Mike and I just knew no matter what, he was going on this journey with me,” says Jill.  “Believe me, the last thing Mike wanted to do was have my mother in our lives every minute.  Even though he loved her, Mike felt my personality changed, and not for the better, when I was around my mother.” Now, not only would Mike have Lora in the same city but he would have to live with the “two Jills.”

What came next is something almost all caregivers face because so few families have that essential caregiving conversations before a crisis hits. (In fact, only one-third of all caregivers have had any conversation with their older loved one about long-term care.)   Jill and Mike had to look for the paperwork to close Lora’s bank and other accounts; they had to deal with Lora’s expired passport and driver’s license to get her on the plane to New York.  They also needed to find a memory care facility in New York City, and the list didn’t stop there.  After the move to New York, it eventually became clear that although Lora needed almost constant care, the facility that Jill and Mike found for her was not a good fit.

Caregiving As An Ensemble Show

The solution came when the apartment literally across the hall from Jill and Mike became available and they moved Lora (whom the family calls Lolo) in.  Around the same time both son, Max, and their daughter, Alison, from Mike’s first marriage, found themselves living in New York and helping out with caregiving duties.  Alison, who is a chef and personal caterer, cooks most of Lora’s meals, Max gives his parents some respite by playing companion to his grandmother (when he is not playing drums in his band) and two professional nurses round out the “a la famigla” that Mike had always envisioned as part of their Italian excursions but is actually now playing out in the Big Apple.

Photo courtesy of Kristine Walsh

“We could not have planned it better but going through this experience really brought us together as a family,” says Mike.  Besides the familial ties, Mike believes his gifts from caregiving are that he and Jill have become even closer and that he is now more realistic about his future and how he will want his family to care for him.  Jill told me that she feels caregiving has taught her to “just let things happen and to not be in denial because it doesn’t serve you.”   She also feels it has improved the communication she and Mike have and his support has allowed her to really discover who she was through this experience.

As the “Tuckerberry” family gathered recently for Lora’s 93rd birthday, Jill and Mike have proven successful as both co-stars on screen, in life and in caregiving.  When I think of Jill and Mike, I think of Julia Child’s quote, “…nothing is too much trouble if it turns out the way it should.”

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Jan 112012
 

As 2012 begins, I would like to review some of the highlights of the Alzheimer’s Disease world this past year, and the new directions that we will likely be heading toward in 2012.

  • This year we saw the publication of new diagnostic guidelines for Alzheimer’ s disease formulated by committees sponsored by the National Institute on Aging and the Alzheimer’s Association. The National Institute on Aging and the Alzheimer’s Association also published guidelines for diagnosis of mild cognitive impairment due to Alzheimer’s disease and for preclinical Alzheimer’s disease. These guidelines will be important tools for clinicians to diagnose Alzheimer’s in its earliest stages, and represent the first revision in 25 years.
  • An FDA advisory committee gave preliminary approval of the PET amyloid imaging ligand AV-45, citing work to be done to ensure consistency in reading PET scans. Full approval is expected sometime in 2012, if a uniform training program is implemented for radiologists interpreting the scans.
  • The European Medicines Agency announced the likely approval of hippocampal atrophy as a marker of early Alzheimer’s disease for the purpose of clinical trials. Much work has gone into linking hippocampal atrophy visualized by MRI  as an early and specific biomarker of neurodegeneration seen in Alzheimer’s disease.
  • IGAP—the International Genomics of Alzheimer’s Project, a transatlantic collaboration to create the most detailed map of genetic variants that link to Alzheimer’s disease was also launched in 2011. Meta analysis of genome-wide association studies (GWAS) revealed four new genetic risk variants for Alzheimer’s disease.
  • In terms of clinical trials, Gantenerumab, an antibody against beta-amyloid, was shown to clear plaques when given intravenously, according to results from a Phase 1 trial. The drug seems to be one of the most potent developed thus far in reducing plaques. A Phase 2 gene therapy trial for Parkinson’s disease was deemed a success. A similar Phase II gene therapy trial for Alzheimer’s disease, called the Nerve Growth Factor Study, is currently ongoing and recruiting. Multiple clinical trials, including the ADCS Phase III Resveratrol and Roche Phase II Gantenerumab trial are launching in 2012.
  • A very important paper by the Holtzman group at Washington University further established the relationship between ApoE4 genotype and decreased clearance of beta-amyloid from brain, both in humans and animal models. The idea that ApoE4 is less effective in removing beta-amyloid from the brain is not necessarily novel, per se, and had been previously shown. However, it had never been proven so convincingly and in such a complete manner in humans and animal models of Alzheimer’s disease. Together, the data suggest that ApoE variants contribute to a person’s risk for Alzheimer’s by affecting the clearance of beta-amyloid from the brain long before amyloid plaque deposition begins. Later in the year, the same group reported that, in mice, lowering the levels of ApoE4 results in fewer amyloid plaques. The results imply that ApoE-lowering treatments have a place among proposed Alzheimer’s therapies, including immunotherapy, gene therapy, and beta- and gamma- secretase inhibitors.
  • Results published in the Journal of the American Medical Association showed that women with sleep-disordered breathing (SDB)— pauses in breathing or reduced ventilation quality during sleep — are more likely to develop cognitive impairment five years later. The biology behind this finding may include hypoxia, or decreased oxygen delivery to certain parts of the brain, including the hippocampus which is critical in memory function. In addition, sleep fragmentation, which can interfere with memory consolidation, which occurs during certain stages of sleep, may also lead to cognitive problems. This study has really brought much needed attention to the evaluation of sleep as part of the work-up in individuals with Mild Cognitive Impairment.

We anticipate further progress in understanding the progression of the earliest stages of Mild Cognitive Impairment and Alzheimer’s disease with the Alzheimer’s Disease Neuroimaging Initiative (ADNI2), The Dominantly Inherited Alzheimers Network (DIAN) study and the Alzheimer’s Prevention Initiative (API) during 2012.

By Michael Rafii, M.D., Ph.D.
Director, Memory Disorders Clinic
Associate Medical Core Director
Alzheimer’s Disease Cooperative Study
University of California, San Diego

Sep 272011
 

Dear Readers,

The recent results from a clinical trial of insulin for the treatment of AD has garnered a great deal of media attention. Before discussing the research, it is worth reviewing insulin’s role in the brain.

Insulin is critical for normal brain function, and abnormal insulin metabolism has been shown to contribute to the development of Alzheimer’s disease. Because patients with Alzheimer’s disease also exhibit decreased levels of insulin in the central nervous system, it has been hypothesized that raising these levels to normal might help maintain cognitive ability. Studies involving animals have suggested that insulin deficiency in the brain may possibly be a key factor in the progression of Alzheimer’s.

The trial, published online in the Archives of Neurology, is in fact, a randomized, double blind placebo controlled Phase II clinical trial which included 104 people. In the study, researchers at the University of Washington divided the subjects into three groups. One group received placebo, one received 20 international units of aerosolized insulin a day, and the third received 40 international units a day.

The average age of the participants was 72, and more than half were men. Sixty-four of them had amnestic mild cognitive impairment, and forty had mild to moderate Alzheimer’s disease. Amnestic MCI is thought to represent the pre-dementia phase of Alzheimer’s disease. Importantly, no serious treatment-related adverse events occurred during the study.For four months, 36 participants received 20 International Units (IUs) of insulin a day, 38 received 40 IUs a day, and 30 received a daily placebo, all delivered via nasal spray.

The researchers looked at the effect of the treatment on cognition, daily function, and for some participants, they measured biomarkers of cerebral glucose metabolism and cerebrospinal fluid. The primary measures were delayed story recall (how well participants recalled a story told to them immediately after and a short time later), and Dementia Severity Rating Scale (DSRS) scores of the participants (a multiple choice questionnaire that is filled in by caregivers).

For the primary measures, the results showed that compared to the placebo group: The participants who took 20 IUs of insulin a day showed improved delayed story recall, which was statistically significant. However, there was no improvement for the participants who took 40 IUs of insulin a day. The DSRS caregiver-rated functional ability was maintained for the insulin groups, while those on placebo worsened.
Although there appeared to be no change in cerebrospinal fluid biomarkers for insulin-treated participants as a group, exploratory analyses showed changes in memory and function were linked to changes in the beta-amyloid level, and in the tau protein to beta-amyloid ratio in cerebrospinal fluid.

A third group also had scans to assess their brains’ use of glucose. One hallmark of Alzheimer’s disease is reduced metabolism in the brain, which shows up on scans as less use of glucose, the fuel for brain cells. In this assessment, those getting insulin used more glucose in their brains while those receiving placebo used less.

Although the trial achieved statistical significance for its primary outcome measures, the observed effects were small in absolute terms, and thus their clinical significance is unclear. The trial was a small, single-site pilot study, which presents special challenges in the interpretation of results; clearly, a longer, larger, multisite trial is needed to confirm and extend the findings.

Intranasal Insulin Therapy for Alzheimer Disease and Amnestic Mild Cognitive Impairment: A Pilot Clinical Trial. Craft S, Baker LD, Montine TJ, Minoshima S, Watson GS, Claxton A, Arbuckle M, Callaghan M, Tsai E, Plymate SR, Green PS, Leverenz J, Cross D, Gerton B. Archives of Neurology. 2011 Sep 12.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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