The claim

This theory has to do with substances called ketones. The damage caused by Alzheimer’s disrupts the brain’s ability to use its primary energy source, known as glucose. The brain naturally gets a portion of its energy from ketone bodies when glucose is less available (e.g., during fasting, strenuous exercise and in newborns). Ketones may provide an alternative energy source to the brain’s cells to moderate the damage caused by Alzheimer’s disease. The body produces ketones when it metabolizes coconut oil and similar substances (fatty acids).

Beyond the headline

Unfortunately, there just isn’t any creditable science to support this idea. It is impossible for us to know how well coconut oil does or does not work in Alzheimer’s disease because there have not been rigorous, large-scale research studies done.

The bottom line

Because there haven’t been any large studies to test the effectiveness of coconut oil, we just can’t say whether it really helps people with Alzheimer’s disease. Maybe it does, maybe it doesn’t. I personally suspect that it has little effect on Alzheimer’s symptoms but, to be fair, I haven’t had any family members, friends or clients who’ve tried it.

My rule of thumb is that if the risks and costs are low, you might consider trying it. If the risks or costs are high, don’t chance it. Think about how you would feel if you gave your loved one something and they lost ground and independence as a result.

Some alternative therapies have substantial risk associated with them; be careful and don’t assume that something that is “natural” is safe. If you are considering trying coconut oil, please consult your doctor first to make sure it will do no harm to the person with dementia

About the  author: Elizabeth Edgerly, Ph.D., is the chief program officer for the Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Dr. Edgerly, click here.

This post originally appeared on www.alzheimersblog.org.

Learn More:

• Alzheimer’s Treatments
• Caprylic Acid and Coconut Oil
• Alzheimer’s Research

A year later, I found out that I carry the ApoE 4 gene, which means I have a genetic risk factor for developing Alzheimer’s disease. This gene was passed down to me from my mother’s side of the family. My doctor informed me that I had mild cognitive impairment, meaning that I was at increased risk for Alzheimer’s. This January, I learned that I had progressed to early-stage Alzheimer’s.

When I was diagnosed, I got very down. But I’m an extremely positive person, and I don’t take “no” for an answer! I said a prayer and asked for help, because I was tired of being negative. I turned things around in one day. I decided that I’ve got Alzheimer’s and it’s got a hell of a fight with me!

I started giving presentations about Alzheimer’s disease. With support from my local chapter, I speak at houses of worship, corporations, community organizations — anywhere that will have me. I do this to raise awareness, and in hopes that there will be a day when Alzheimer’s can be prevented, effectively treated and cured. My kids are in their 40s, and they may have the gene. I do this work for them, and for their kids. I do it for the future.

I will continue to use my voice to fight this disease as long as I can. I will never give up. And I’m hoping you will join me by signing the Alzheimer’s Association Petition for a strong National Alzheimer’s Plan. Right now, I am with hundreds of other advocates at the Alzheimer’s Association Advocacy Forum in Washington, D.C. This week, we will deliver a message to our elected officials that Alzheimer’s can’t wait. You can make that message stronger by adding your name to the petition. To sign, click here.

The more that I’m involved, the more I find that fear is the greatest obstacle to defeating this disease. People don’t want to know how cruel Alzheimer’s is, or what’s coming down the pike if this country doesn’t get a fix on it soon. But together, we can raise awareness and work toward a future where our children and grandchildren don’t have to face this disease.

Today’s guest blog comes from Bill Frost, a member of the Alzheimer’s Association’s^® national 2011 Early-Stage Advisory Group, a council that helps the Association raise awareness of the issues faced by people with Alzheimer’s, advocate for research and support programs and provide the best services possible to people with the disease. Diagnosed with early-stage Alzheimer’s in January 2012, Bill is a retired telecommunications executive and consultant. He and his wife of 51 years, Nancy, live in Houston, Texas. They have three children and one granddaughter.

Learn More:

• Petition for a Strong National Alzheimer’s Plan
• Become an Alzheimer’s Advocate
• Alzheimer’s Association Forum
• If You Have Alzheimer’s
• Caring for Alzheimer’s

This year, I was on the “purple carpet” in Beverly Hills to interview celebrities attending the 20th Anniversary of the gala event.  They shared how Alzheimer’s has affected their life—and why they come together to raise awareness and funds to find an end to Alzheimer’s each year.

On the Purple Carpet

David Hyde Pierce was the host for this year’s event.  An Emmy-winner (Frasier) and Tony Award winning actor (Curtains), David has been a longtime advocate and champion for the fight against Alzheimer’s disease which affected both his father and his grandfather.  As he told me, “Losing a father and grandfather to Alzheimer’s was twice too much for my family.”  Watching the impact that the disease had on both his mother and grandmother – the caregivers to his dad and grandfather respectively – gave David a profound respect for the plight of the family caregiver.

David has testified before Congress to support the passage of the National Alzheimer’s Project Act which was signed into law by President Obama with plans to fund $50 million for Alzheimer’s research and provide another $130 million to include caregiver support and education over the next two years.  This is a great first step in a movement that needs to keep moving and David is helping to lead the cause with his support for a disease he calls “an epidemic in this country.”

I asked him about how caregivers can keep their spirits up even in the face of such a devastating disease.  As someone who brought his urbane wit to the indelible Dr. Niles Crane on Frasier, David replied, “Anyone who has dealt with Alzheimer’s knows how important it is to have a sense of humor and to be able to maintain one, it is what gets you through the day.”

Jane Seymour, star of the big and small screens (Somewhere in Time, Dr. Quinn Medicine Woman) joined her husband, TV and movie producer James Keach (Walk the Line) to walk the purple carpet for family and friends impacted by Alzheimer’s disease.  Jane’s aunt was caregiver to her uncle with Alzheimer’s for many years and both Jane and James are producing a documentary on country music legend Glen Campbell as he battles the stages of Alzheimer’s during this farewell music tour.

Jane told me, “For the caregivers, that is the hardest job of all…when someone has Alzheimer’s you forget that the caregiver has to be there 24/7 . . . and in many cases it is detrimental to the health of the caregiver.”

James told me that being on the road with the Campbells while filming the documentary really hit home for him on how difficult Alzheimer’s is on the family – especially the primary caregiver such as Campbell’s wife, Kim.  But, having his family surround him on tour helps Campbell maintain a sense of balance in a world that is progressively out of balance.

Peter Gallagher, TV (Covert Affairs, The O.C.) and film star (Burlesque, American Beauty) as well as recording artist (7 Days in Memphis) has felt the full impact of Alzheimer’s on his family as he was caregiver to his mother who lived with the disease for 20 years.  In fact, Peter was one of the original stars who joined other celebrities at the very first A Night At Sardi’s event 20 years ago.

Peter told me an Alzheimer’s diagnosis can be as devastating to the caregiver as to the person diagnosed, “Doing it yourself, I don’t know how long you are going to last . . . [but] the more you understand about the disease the better.”  He said that this disease can be “embarrassing” and “terrifying” but that is why the Alzheimer’s Association is a great place to start to find the help and support needed.

Joey McIntyre, as the youngest member of the 80s boy band phenomenon New Kids on the Block, Joey is also the youngest of nine growing up in Needham, Massachusetts.  His mother was recently diagnosed with Alzheimer’s and Joey told me, “It’s a process and it’s different for everybody . . . it is bittersweet because with my mom, she is still there, she’s got the one liners and she is so funny and she is still a performer but she doesn’t remember five minutes ago . . . it’s tough for the families.”  While Joey said that some of his other siblings provide the primary care to his mom, his role is to get the word out – using his fame to bring attention to Alzheimer’s and helping to find a cure.

Marilu Henner remembered for her starring role on TV’s Taxi, is currently guest starring on a new TV program based in part on her real life gift of hyperthymesia, which is superior autobiographical memory skills.  As seen on 60 Minutes, Marilu can essentially recall tiny details of things that happened on any date in time during her life.  Ask her what happened on November 1, 1976 and she can tell you.  She serves as a consultant on the CBS series, Unforgettable, which stars Poppy Montgomery as Detective Carrie Wells with the same memory skills as Marilu.  The program received the Alzheimer’s Association Abe Burrows Entertainment Award for the inclusion of an Alzheimer’s story arc that raises concern and awareness about Alzheimer’s disease and is a reminder of how prevalent Alzheimer’s disease is in our everyday lives.

When it comes to caregiving, Marilu told me, “The caregivers have to take care of themselves, sometimes the patient looks better than the caregiver . . . they have to be able to take time for themselves [because] they are on their reserve tank most of the time . . . you have to set up your environment to win for both of you.”  Her latest book, Total Memory Makeover, helps those hoping to keep their brain in as good a shape as their bodies.

Lamorne Morris, TV host and actor (New Girl) is one of the young crop of stars who believe shedding light on Alzheimer’s disease is important to everyone.  While he is not touched by the disease in his family, he has many friends who have loved ones with Alzheimer’s. I asked Lamorne about the importance of younger generations in the fight against Alzheimer’s.  He told me, “This is the age of social media and so the younger kids are checking for their favorite people on Twitter and on Facebook . . . someone on Twitter who has a million followers, if you send out a Tweet about the cause, that is a lot more people who are aware of it and I think it is very important that more and more younger people get involved.”

The event also honored Susan Disney Lord with the Alzheimer’s Association Caregiver of the Year Award. She was a caregiver for her mother, Patricia Disney who recently died from Alzheimer’s at the age of 77. Disney Lord is a philanthropist, advocate, and active member of the Alzheimer’s Association California Southland Chapter Board of Directors and a member of the family who has helped to make the world “a happier place.”  Her hope is that we can create a world where Alzheimer’s no longer exists.

That wish is one that would make Susan and the many other attendees gathered for A Night At Sardi’s very happy indeed.

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.

Writing a fictional Alzheimer’s narrative—creating a neat and orderly plot whose course I could control, from a disease by nature chaotic and nonlinear—was impossible.  In the way that a son or daughter doesn’t know exactly what to expect during a visit with a parent who has Alzheimer’s, it’s inconceivable (some might even say ridiculous) for a screenwriter to map out the trajectory of a scene in an Alzheimer’s Unit, and expect it to play itself out in a manner remotely resembling what was written.

Other than the loose structure provided by a schedule of daily activities—a parachute toss, the hair salon, an oldies sing-a-long—life in an Alzheimer’s Unit does not follow the logic of the real world. It is founded upon the incidental and accidental; a string of interactions and experiences that digress unpredictably, omnidirectionally, and constantly turn back on themselves. The Alzheimer’s Unit almost never adheres to the continuity of the linear narratives that we enjoy on a daily basis—or that screenplays require.

The first time I visited the Traditions Alzheimer’s Unit in Danville, Calif., I was greeted at the door by Lee Gorewitz, a spry septuagenarian in a baby blue jogging suit.  With the exuberance of a cruise director, Lee presented herself as a staff member, took my hand and gave me a tour, during which she delivered a soliloquy unlike anything I had ever heard before: for well over a minute she prattled on about purses, windows and gardens, before she eventually locked eyes with me and said: “I hear the song in my ears, and I think they don’t love me anymore.”

From this spontaneous word-salad came two things that forever altered my film project; I realized Lee was not staff, but a resident.  And, I decided, her presence in the Unit was reason enough to throw away that screenplay I’d just written.

For the next six months I visited Lee with the hope of making a documentary that would capture her inner universe: the discord and frustration, the communication breakdown and uninhibited behavior everyone speaks of when they speak of Alzheimer’s—and, the unusually poetic candor it can distill. Reflecting on her birthplace, Lee would say, “Brooklyn, it’s right behind you.” Considering love: “That’s a damn good thing to work with.” Regarding her deceased husband: “How do I even say it? The air — was very good.”

Like many in an Alzheimer’s Unit, for Lee every day is an odyssey: wandering to and fro with no destination in particular, on a quest for something that she can neither articulate nor comprehend. Having advanced Alzheimer’s was once described to me by a neuroscientist as akin to waking up in the middle of hinterland Russia, alone, not knowing a lick of the local language, not knowing how you got there, and being expected to act like it was home.

Due to that constant sense of disorientation, in the span of minutes Lee could morph from pensive thinker, to gregarious helper; from bubbly mover-and-shaker, to morose and sometimes cruel instigator. When in good spirits, she consoled heartbroken women, kissed caregivers and shook a tail feather even after the music had stopped.  And with no realistic option for leaving, Lee also gave in to frustration: she argued with her tablemate at lunch, kicked a bouncy ball at a frail man’s legs, and unapologetically told a sickly woman that she is going to die.

My time with Lee, and her struggle, left me utterly confounded. Who should say Lee’s fragmented reality is any less valid than my own?

Composer John Cage once wrote,  “The first question I ask myself when something doesn’t seem to be beautiful is why do I think it’s not beautiful. And very shortly you discover that there is no reason.” A shift happened for me when I started to embrace the sublime chaos of Lee’s world.  Spending time with her became not about remorsing on what will never be; her past (most of which she cannot remember)—nor was it about analyzing the tragedy of her plight.  It became about letting Lee tell her own story, one unfolding in the context of a cruel, debilitating disease. And it became about learning that there was no reason not to let that story seem beautiful.

In ways that are often painful and intense to the rest of us, Lee and others with Alzheimer’s stumble along a road we’re all traveling, trying—often desperately—to communicate something, anything, grasping for unanswerable riddles.

And until there’s a cure for Alzheimer’s, there’s one way, outside of medicine, to counter this disease, which we all have within our reach, whatever the road, whatever our relative agility at traversing it.

Empathy.

Scott Kirschenbaum is a filmmaker based in San Francisco, Calif. His documentary “You’re Looking At Me Like I Live Here And I Don’t” will premiere nationally on PBS’ Independent Lens on Thursday, March 29, 2012.

But she does a pretty good job of making me feel like she does. I believe she knows there is a connection. She keeps it very simple when she talks to me. Partly I think because she knows that she can’t quite remember but is still witty enough to know that she doesn’t want to make it any more confusing than it already is for her.

I think she is past the most scary part— realizing she is “losing her mind.” She knew something was happening. And at first I thought it was just my mom being dramatic. But looking back a few years, her behavior was strange. And soon it was clear that she was slipping away. That mostly showed up in her feeling scared and not wanting to be alone.

I remember in the fall of 2008, she said something very profound and sadly poetic. She said, “me and the night don’t get along.” I thought that was quite a lyric. My mother was as witty as they come. She wrote tons of poems and parodies of songs. Mostly for co-workers leaving for another job or for cast-mates at the end of a show she was in. Or for my sisters’ bosses or workmates. She would whip something up in an evening. She could do it all. Of course she had and raised nine kids — that says it all.

I don’t want to keep saying WAS because she still IS. She still has her one-liners. She is still sweet and very interested in what you are saying.

When I saw her last December at my sister Carol’s Christmas show at the fabled Footlight Club, she was so into the show. I enjoyed watching her as much as the show. If you didn’t know she had Alzheimer’s, you wouldn’t think it. She was very in the moment — happy to see my father introduce my sister, but also zinging him saying to herself, “he’s awful.” She watched each song— liking some and loving others. But then a few minutes after, I asked if she liked the show, and she answered, “what show, dear?” That kind of sums up where she is right now.

I am no expert and I am 3,000 miles away, but she is doing ok for someone at her stage of this disease. My mother was a force and could do so many things. Now, she is very slow. But through all this there is a bitter sweetness. I hear stories from my siblings about how sweet she is and the simple loving words she says to them. There is still a person in there. And she is alive and still working it out.

I think she still knows that she has some kind of disease, but she has moments of peace. Hopefully, with more funding and the hard work of all involved, we can find a cure so that Alzheimer’s will not affect generations to come. This disease affects the whole family. My mother is so fortunate to have the care she has, but so many are not as lucky.

I will be running the Hollywood Half Marathon on April 7, 2012, in her honor — and in honor of all those affected by Alzheimer’s — and to raise awareness and funds for the Alzheimer’s Association. If you can, please donate to my page at http://www.crowdrise.com/JoeyMcIntyre

Thank you for always supporting me in anyway you can— in your thoughts and prayers and deeds.

Joey McIntyre is a singer/songwriter who rose to fame as a member of New Kids on the Block selling over 80 million albums and countless sold-out shows worldwide. He continues to push boundaries with his music as a solo artist and has vast theatre and screen experience including appearing in Wicked on Broadway and as a season regular on Boston Public. Recently, Joey declared himself an Alzheimer’s Association Champion and is fighting to end Alzheimer’s on behalf of his mother who is living with the disease. 

Almost eight years at the Alzheimer’s Association — five at the Utah Chapter and close to three at the National Office right here in Chicago — left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of 89. It’s a delicate imprint, and it still hurts sometimes, even though she died more than 20 years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Alzheimer’s Disease Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are more than 15 million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over 17 billion hours of care valued at more than $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report—the most recent I could find that provides general numbers — compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me — the one on my heart — I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared and doesn’t know where to turn for help. She feels incredibly alone. Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

About Guest Blog Author Carrie Steckl, Ph.D.

Carrie Steckl, Ph.D. is a freelance writer specializing in caregiving, psychology, and aging. Her blog, “Ask Dr. Chill,” provides practical answers to the toughest caregiving questions.

Is music one of the keys to a longer, happier life – despite your health issues?

The news about Campbell got me thinking about studies and articles I have read about music therapy.  Although music has been with us since the dawn of time, in the last few decades studies have found that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients, and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses — hearing — which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

And, music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions — music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success.

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age 4 with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable — it is a way for R.J. to communicate without being judged.”

Music — Cure for Caregiver Complaints, Too

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

1. Discover the “happy times tunes”:  Talking to your loved one about happy times in their life and understanding the music associations with that time are essential.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful.  Music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
2. Engage younger generations:  You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
3. Pick the right setting:  It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player.  And, be careful with headphones — some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also, consider live music situations carefully.  For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But, for special needs children and some older adults — the unsettling activity of a live concert or band can be frightening.
4. Let your music play:  As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey,  found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in the nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
5. Find a professional music therapist:  The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

 Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA website:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

©2012 Sherri Snelling

Learn More:

• Caring for Alzheimer’s
• Music, Art and Other Therapies
• Activities

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.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game . . . and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day. But, in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor. He was and still is considered one of the best tight ends to ever take the field. In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.
As a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history. It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown. It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia. Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker. At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down. One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” said Sylvia.

But, this year was different. There was an incident with the TSA airport security that almost took them both down – literally. Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned. In his mind, he did not understand that there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote that courage is grace under fire. When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great. It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself. That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International. She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove items precious to him. In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names. One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions. Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

Sadly, John Mackey lost his battle with dementia and passed away in 2011. A few years before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term-care (LTC). In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today. The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007. The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare. Prepare. Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book on celebrity caregivers and the lessons of love and caring that will be published in November, 2012.
©2012 Sherri Snelling

Learn More:

• Caring for Alzheimer’s

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.

Ahh the New Year is here – the hectic pace of the holidays is over, the frenzy over buying gifts and seeing  friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – that moment to put the world on “pause” and get a break never seems to happen.

When it comes to caring for an older parent, a chronically ill spouse or a child with special needs, we know that caregivers are at risk for adopting bad habits such as smoking or drinking, for not getting enough sleep, for not having the time to eat or exercise right and for not taking enough time to focus on themselves – whether it is a coffee date with a friend, a pedicure, a movie or other things that can bring a smile to our face.

This is why my wish for all caregivers this year is to make a promise to yourself that you can keep.  Make it simple.  Make it just about you.  Here are some tips on how to get there:

3 Steps to Keep That Promise to Yourself

1.       First of all, you need to have an actual plan. If you just have a desire to improve something, it is not enough.   You will be more successful at achieving your goal if you have steps on how to get there.  For instance, it is not about losing weight – it is about the changes you will take to reach that goal.  Breaking a big goal into small increments is a key part of your plan.

2.       In addition, you need to track your progress.  This instills a sense of mini accomplishments on the path to your goal.  It helps to talk to someone who is invested in seeing you be successful.  Having a friend or other support person who can be your “cheerleader” – celebrating your milestones towards the goal can help keep you going.

3.       Lastly, be committed to your goal.   Keep it simple (one resolution is better than two or three) and treat occasional “slips” as temporary setbacks on the path to reaching your goal.  You have to commit to change.   This is a marathon not a sprint.  Be kind to yourself if you have a bad day that makes you reach for the chocolate.  Remember the words of Scarlett O’Hara, “Tomorrow is another day.”  Start fresh the next day after a lapse.

My Answer:  Me Time Monday^SM

I had the luck of meeting with a non-profit organization that I thought had a brilliant idea.  It is called Healthy Monday – based on scientific research and the support of prestigious institutions such as Johns Hopkins University, Syracuse University and Columbia University, they have found that starting a new routine on a Monday will make you more successful at whatever you want to achieve.  Essentially the premise is simple – just as the New Year is a time when we resolve to do something, every Monday is an opportunity to renew that promise to ourselves.

Healthy Monday says their research shows that most Americans feel Monday is the day for a fresh start.  It is part of our cultural DNA – Monday is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend respite.

For caregivers, I believe using the Monday point in time to remind you of “what have I done for me lately?” would make sense.  Whether it is 5 minutes or 5 hours – it does not matter.  Check in with yourself every Monday and take time for you.

I was thrilled when Healthy Monday created a specific Caregivers’ Monday campaign.  They are part of a national movement to get our society focused on the value of family caregivers and the need to help caregivers stay healthy themselves.

Fifty-two weeks to reach your goal.  Pick one thing that you would like to accomplish just for you this year.  Check in with yourself every Monday.  And, tell me what your “Me Time” tip is – I will include it in future videos and blogs.  Good luck – 2012 is your year!

Learn More:

• Me Time Monday Tips
• Alzheimer’s Association Stress Check
• Respite Care

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.

• 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