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.”

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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.

Jun 152012
 
mother_daughter_noses

Whether your musical tastes run to the 70s television show with the Partridge family singing their theme song, C’mon Get Happy, or the 1950s song that inspired it, Get Happy, made famous by Judy Garland, the message is that happiness is in our hands not something we are handed.

When it comes to caring for a loved one, happiness may not be the first emotion that you would associate with a life role that many find overwhelming, frustrating, exhausting and time-consuming. Yet, as I researched more about happiness and how we go about creating the happy factor in our lives, it was apparent that many of the activities associated with caregiving are actually the principles that experts say will make us happier in our lives.

Following are five principles identified by Dr. Ian K. Smith in his book, Happy   Simple Steps to Get the Most Out of Life. I have taken his principles and added my own caregiving take on these tenets along with some tips on enhancing each of these ideas to create the maximum happiness along your caregiving journey.

1. Be kind, do something nice for someone, volunteer
According to the National Alliance for Caregiving, 75 percent of caregivers feel they had no choice to become a caregiver, the need was there and they were the one to fill the role. Even if you felt you had no choice, you have volunteered for one of life’s most important roles  caring for a loved one. This is one of the kindest, nicest gifts you can give another person. You are paying it forward for your own care later in life.

My tip: Be kind to yourself just like you are kind and caring to your loved one. Take the time to write yourself a thank-you letter for everything you do  the patience, the time, the love you are providing. Take this letter out and read it on days when you feel down or like you cannot go on. Congratulate yourself for the wonderful gift of caring  and the gift of volunteering  that you are giving.

2. Strengthen and deepen personal relationships
We know from numerous studies that isolation is bad for our older loved ones  it impacts both their health (such as not eating properly or enough) and their wellness (sometimes leading to depression). By spending quality time with your loved one, you are helping them achieve better happiness. What will take this up one more notch is to talk to them about days gone by. When I would spend time with my grandpa  he loved to talk about his early childhood growing up in Cleveland and riding the wooden roller coaster at Euclid Beach. Nostalgia and legacies are important to our older loved ones and we can learn a lot we may not have known about our family’s history.

The flip side of this happiness principle is carving out time to strengthen your other relationships. What researchers at Harvard University and the University of California at San Diego found is that our friendships actually can improve our happiness quotient. Their study showed that happiness is like a virus that spreads through social networks  your friends’ happiness and even their friends’ happiness can affect (or infect) you. The happiness of a first degree contact friend increases your happiness by 15 percent!

My tip: Increase your happiness factor  carve out time to grab a coffee or go on a walk with a happy friend and feel your spirit uplifted.

3. Develop a spiritual life – practice forgiveness
When we search for deeper meanings in life, believe in a higher power, or just take the time to understand both our own and other’s limitations, we are on the path to more happiness in our lives. Numerous studies have shown that our spirituality increases as we age. Forgiving your loved one for their behaviors  whether it is their crankiness, their obstinance or their constant needs  is hard for caregivers. Take these trying times and forgive your loved one because in the end they are probably afraid and that often changes our personalities. For your sake, find an expert that can give you techniques on how to cope so you can maintain your happiness level.

My tip: It is important that caregivers find experts: geriatric care managers, a therapist or caregiver support groups can all help you find ways to forgive the person you are caring for and forge new ways to cope when you get frustrated. Caregiving support groups can be a terrific resource on techniques on coping.

4. Spend money on someone else
This is a little tricky because sacrificing your own financial future is a concern I have for caregivers. A National Alliance for Caregiving study showed that one-half of all caregivers spend 10 percent of their annual salary on care-related costs. While you do not want to go bankrupt while caring for your loved one, feeling good about paying for something your loved one needs can be very satisfying and puts a deposit into your happiness account.

My tip: Ensure you talk to your financial planner or accountant about your caregiving responsibilities and especially about what you are spending out of your own pocket so they can help you save your nest egg. It may be that some of these costs can be covered under Medicare or Medicaid or you may even be able to qualify for tax credits if your loved one depends solely on you and other criteria you must meet to claim them as a dependent.

5. Be hopeful (the glass half full form of optimism)
The Mayo Clinic actually did a study tracking participants over a 30-year period and found that the optimists had a 19 percent higher chance of still being alive and that they suffered less from depression. Other studies have shown that optimistic people have less chronic stress because they view setbacks as minor incidents that can be overcome. We know chronic stress is the number one factor that causes caregivers to develop chronic illness at twice the rate as the general public according to a study by the Commonwealth Fund.

My tip: One of the characteristics of an optimist is the power of their smile  remember how good you feel when someone smiles at you? You inevitably smile back and for a few seconds all seems right with the world. Even though you may be blue or having one of those days  try smiling. It is hard to be mad or sad when you have a smile on your face.  Sonja Lyubomirsky, a researcher at the University of California at Riverside and who has long studied the health impacts of smiling, finds that people tend to mirror each other. Smiling is truly infectious  it catches on faster than the flu. You will be amazed how happy you are when you just smile.

Charles Schultz, cartoonist and creator of the Peanuts comic strip said “Happiness is a warm puppy and a side of French fries.” I am smiling as I write this (because I agree with him) and I hope you are smiling as you read it. Caregiving can be many things and maybe it can even make you happier.

©2012 Sherri Snelling

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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.

 

Jun 112012
 
Coconut portion on white

My recent blog entry “Can Coconut Oil Treat Alzheimer’s?” generated a lot of comments with the same question: “Why isn’t the Alzheimer’s Association researching coconut oil?” It’s an excellent question and one I get often about coconut oil and other substances that have been rumored to help people with Alzheimer’s.

At first glance, the answer is simple: we’ve received few, if any proposals specifically studying  coconut oil. However, we have received a little over half a dozen proposals on studies that look at substances derived from coconut oil such as ketones. Most recently, we funded a study in 2010 by David Morgan, Ph.D. from the University of South Florida. Find a summary of his study here: Ketogenesis and Alzheimer Pathology.

In addition, I encourage readers to check out the section of our web site that discusses a research study on Caprylic Acid and Coconut Oil. This substance derived from coconut oil looked promising in early studies but the makers of the supplement opted to stop researching it prior to phase three trials that would have tested effectiveness. We were disappointed they didn’t continue the study.

At the Alzheimer’s Association, we fund mainly studies by new investigators, which helps us encourage the next generation of Alzheimer’s researchers and introduce fresh ideas to the field.

Every year, we receive grant applications through an online proposal process from hundreds of researchers from around the world. Those proposals are then peer reviewed by a panel of three to four volunteer Alzheimer’s research experts and they are scored and ranked. Finally, they are sent to the Alzheimer’s Association Medical and Scientific Advisory Council (MSAC), a group of nationally and internationally recognized Alzheimer’s experts. The MSAC is tasked with ensuring fairness and equity in the peer review process and making recommendations for funding to the Alzheimer’s Association.

Basically, our research dollars go to the research proposals that have the most merit – no matter what the institution or country of origin, we simply want to fund the best designed studies that will get us closer to better treatments, early detection or prevention.

However, while we are the largest private nonprofit funder of Alzheimer’s research, even we cannot fund all of the studies that should be funded. For example, out of the hundreds of research proposals we received in 2011, about 22 percent were found to have merit; but we only had the resources to fund about the top 9 percent. Those studies that don’t get funding from us may find funding elsewhere, or re-apply next year – but in some cases, they fall to the wayside. It’s frustrating to know that the answers may be out there, right within reach but the research funding simply doesn’t exist.

We are working hard on several pieces of legislation right now that will help ensure the future of Alzheimer’s research, including the Breakthrough Act and the HOPE for Alzheimer’s Act. We’re already seeing our work on the National Alzheimer’s Project Act starting to benefit the research community and hope that it continues to do so.

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.

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Jun 012012
 
Lee and Val

In 2008, at the age of 62, I was diagnosed with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Not long after, I retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County. While I thought I was functioning well, there were ample signs a few years before, indicating not all was necessarily right with my health.

Part of me recognized this, while another part of me chalked it up to work overload. In fact, I knew I was having a problem with my own self-confidence — and my 15 employees saw it more clearly, and earlier, than I did; if we are not careful, we tend to forget how intuitive employees truly are. Fortunately, we all came to a point of understanding that I needed help, and the Board of Directors and staff were ready to seek ways to retain me and keep me functioning, while also making sure we were all honest with one another, henceforth.

I was recognizing changes in my own behavior: I was losing my ability to juggle multiple projects. It took more effort to decide which projects had highest priority — and, worst of all, I realized that my self-confidence as an executive was rapidly eroding. I could not find any solutions to turn that around; I didn’t know how to fix it. This was brought home directly, on a couple of business trips (by auto), when I found myself overlooking familiar freeway exits and driving well down the road before realizing I was way off course.

All of this led my wife and I to visit the Mayo Clinic twice in Scottsdale, Arizona, in 2006 and 2007; we also participated in a battery of testing at U.C. San Francisco. I was finally diagnosed with Early-Onset Alzheimer’s on that visit (also known as Younger-Onset Alzheimer’s), with evidence of “Executive Dysfunction.” Several medical doctors, staff and students participated in that discussion, and they video-taped the discussion.  It was an eye-opening experience.

Back home in San Luis Obispo, we also took the time, on two occasions for me to be tested for sleep apnea, in a local lab located in our community. Outcome: “Positive.” Thanks to the technology of this remarkable invention, I now sleep better than I ever have in my life. While I am no expert in this technology, I am convinced there is a direct (negative) relationship between sleep apnea and potential damage to the brain, over time.

Several months later, when this all sunk in, I resigned myself to accept this fate — over which I would have zero control. But, I also have been able to put a face on Alzheimer’s in our local community, by being an advocate and local voice. I have written several “Viewpoints” and “Commentaries” in our local Tribune newspaper. I have formed a close relationship with our local Alzheimer’s Association Chapter Office and its staff, secured a seat on the three-county Chapter Board of Directors, and also accepted an appointment to the Alzheimer’s Association Early-Stage Advisory Group (ESAG) for the 2011-2012 year. This participation, in turn, has opened more new doors with the National Office of the Alzheimer’s Association in very positive ways.

I am well aware there is no known cure for Alzheimer’s. It’s a given, for now, and I refuse to spend much time worrying about it. I prefer to be matter of fact with regard to my diagnosis and I spend more time out in the community and working with the Alzheimer’s office to support them in their work. If there is anything I worry about, it is my family. Family and friends are the best medicine that any of us will have, in a journey such as this one.

Read about Val’s experience as Lee’s care partner.

Blog author Lee Ferrero is a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group. He is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure.  Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

May 312012
 
berries

Berries, they’re not just for breakfast anymore.

In a study published last month in the Annals of Neurology, researchers  reported that consumption of berries and flavonoids showed a slower rate of cognitive decline in women aged 70 and older.* Using data from the long-running Nurses’ Health Study of 122,000 registered nurses, the researchers conducted assessments on 16,010 women.

The Nurses Health Study began in 1976. Every four years they were questioned on their eating habits. Between 1995 and 2001, more than 16,000 women aged 70 and older underwent memory testing. The researchers at Brigham Women’s Hospital/Harvard Medical School in Boston and the German Center for Neurodegenerative Diseases in Bonn, Germany found that greater ingestion of blueberries and strawberries correlated with slower rates of cognitive decline for up to 2.5 years. The women who showed the most improvement consumed two or more servings of the berries each week.

Berries contain a particularly high amount of flavonoids called anthocyanidins that are capable of crossing the blood brain barrier and localizing themselves in the hippocampus, an area of the brain known for memory and learning. Investigational drugs and other alternative therapies often fail because they cannot cross the blood brain barrier or reach the hippocampus.

Flavonoids are known to have antioxidant and anti-inflammatory characteristics which can benefit the brain. The study’s authors acknowledge that previous small trials of berry supplementation have shown positive results as well. In some earlier non-related studies inflammation and stress have been shown to contribute to a reduction in brain functioning. Increasing flavonoid consumption might slow these harmful effects, but more study is needed to test this hypothesis.

The authors acknowledge that this was an observational study that relied on accurate dietary reporting from the nurses. In addition they do not know if the results would apply equally to men since all of the people they studied were female. For the future the authors recommend that men be part of the cohort. Finally, they encourage older adults to consume berries as they offer an easy dietary modification that may delay memory decline and will not cause harm.

*Devore, E. E., Kang, J. H., Breteler, M. M. B. and Grodstein, F. (2012), Dietary intakes of berries and flavonoids in relation to cognitive decline. Ann Neurol.. doi: 10.1002/ana.23594

Jeffree Itrich, M.S.W., M.J.
Sr. Clinical Trials Communications & Recruitment Specialist
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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May 232012
 
Glen Campbell

Glen Campbell

On Wednesday, May 16, the Alzheimer’s Association hosted “An Evening with Glen Campbell,” an event to raise awareness of Alzheimer’s disease among members of Congress. Held at the Library of Congress, the evening honored country music legend Campbell, who is living with Alzheimer’s disease, and his family.

Actress and philanthropist Jane Seymour welcomed a crowd including members of Congress, staff and their families. Seymour’s husband, James Keach, and his filmmaking partner, Trevor Albert, are making a documentary on Campbell and his family, following their battle with Alzheimer’s disease as Campbell conducts his farewell tour.

The attendees watched a brief film highlighting the state of Alzheimer’s today, revealing statistics from the recently released Alzheimer’s Association 2012 Alzheimer’s Disease Facts and Figures report. The film focuses on the cost of Alzheimer’s to the country, which will total a shocking $200 billion in 2012.

Harry Johns, president and CEO, Alzheimer’s Association, started the program by congratulating the assembled crowd on the release of the National Alzheimer’s Plan the day before.

“The release of the National Alzheimer’s Plan is a huge historic moment for our cause. I want thank of all the members of Congress for their support of the National Alzheimer’s Project Act,” Johns said. “Your leadership has made it possible to have a plan that creates a platform to address Alzheimer’s in America, and we truly appreciate that.”

Johns also talked about the challenge ahead, applauding Campbell and his family for their bravery as they publically face this disease.

“There are 5.4 million people today that have this disease, and because of baby boomers like me, that number is going to grow to 16 million in the next 38 years,” Johns said. “What I want to commend Glen and his family for is announcing his diagnosis and staying in the public eye. It sets a precedent and helps to advance conversation about the cause.”

Congressmen Ed Markey (D-Mass.) and Chris Smith (R-N.J.), longtime co-chairs of the Congressional Task Force on Alzheimer’s Disease, also spoke to the attendees, addressing recent successes in the fight against the disease and looking to the future.

“No coach goes into a big game without a strategy, and now we have a fully integrated plan with public and private stakeholders,” Smith said. “We have worked on this for a long time.”

“These families at home, they are heroes. But heroes need help,” Markey added. “You’ve heard the numbers. We have to give them hope.”

Dr. Ron Petersen, director of the Mayo Alzheimer’s Disease Research Center and a member of the National Advisory Council on Alzheimer’s Disease, gave an update on scientific progress in the field and the ways in which the National Alzheimer’s Plan will help to advance that research.

“Now we have a blueprint, a roadmap, for how we are actually going to get to a cure for this disease,” said Petersen. “The charge is back to us, the charge is back to Congress. I think we’ve done part of the work, but in another sense the work has just begun.”

After Petersen’s remarks, Campbell’s daughter Ashley took to the stage to introduce a sneak preview of the documentary focusing on her father’s farewell tour. She and her brothers, Shannon and Cal, are members of Campbell’s band and travel with him; Campbell’s wife, Kim, is his primary caregiver.

“We decided to go on a farewell tour with him to keep his struggle public,” she said. “We didn’t want people to think they were going through this alone. This isn’t a disease that just affects the person living with it — it affects their entire family.”

After a sneak preview of the documentary, Campbell took to the stage and received a standing ovation. Moving around with the microphone in hand, he was at ease, joking with the crowd and teasing his children. He drew repeated thunderous applause as he displayed his skill with the guitar, performing favorites such as “Galveston,” “Wichita Lineman,” “Rhinestone Cowboy” and “Southern Nights.”

Ashley and her family feel that performing is helping Campbell to face his disease and its symptoms.

“We’ve seen music as a form of therapy on this tour. He seems to be happier, to do better with his memory,” she said. “Happiness is the non-medical medicine.”

Throughout the evening, Campbell reinforced this observation, frequently telling the crowd, “I’m a happy, happy man. Do you want to hear some more?”

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May 102012
 
Coconut Oil and Alzheimer's

We’ve received quite a few questions recently about whether or not coconut oil can be used to treat Alzheimer’s disease. This is a topic that comes up often, so I thought it would be helpful to provide some background:

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.

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Mar 292012
 


In the fall of 2008, I wrote a screenplay I intended to film entirely in an Alzheimer’s Unit.  After many weeks of rehearsals, I arrived at a troubling realization: I was not just making a challenging film—I was making the wrong film.

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.

Mar 272012
 

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. 

Mar 092012
 
woman

This post originally appeared on the ChicagoNow blog, “Ask Dr. Chill: Practical Answers to the Toughest Caregiving Questions.” It is being reposted here with the author’s permission.

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.

 

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