Jun 302014
 

Love is a symbol of eternity. It wipes out all sense of time, destroying all memory of a beginning and all fear of an end. ~Author Unknown

I stopped at the desk to sign in and explained to the receptionist I was a reporter from the local newspaper and was doing a story on a gentleman who lived there, a World War II veteran. As I made my way down the corridor to Mr. Walter’s room, I heard the receptionist behind me.

“Mrs. Dodson, you know Mr. Walter is practically deaf and suffers from dementia, don’t you?”18490465_postcards

“No ma’am, I didn’t.”

His daughter, who I’d spoken with days before, failed to mention his condition, but because I was already there I decided to go ahead with the interview.

As I passed room after room, each one looked the same: a single bed, a dark wooden nightstand, and a shiny brass lamp. I smiled at the elders sitting along the wall in their wheelchairs.

“Mr. Walter?” I read his name on the plaque outside his door, but I would have never recognized him by the picture his daughter had e-mailed the day before. A soldier dressed in army fatigues, tall and thin, but with broad shoulders and an even broader smile. It looked as if the photograph had captured him in the middle of a hilarious joke.

He looked up from a sunken blue chair, a blanket covering his lap. I could tell he didn’t understand what I’d said. I sat down on the corner of his bed and introduced myself, stretching my hand out to his while he slowly shook it.

“Aw, you have soft skin!” he said hoarsely.

Luckily, he knew I was a reporter and that I’d come to interview him for a story on local veterans. We spoke for a few minutes, and although communicating was difficult because he was hard of hearing, he had a quick wit and made me feel at ease.

“Can you tell me a little about where you served in the army?” I asked.

The interview began like many others, I asked questions and he answered them. I’d learned over the years as a reporter to say as little as possible, allowing the person to do most of the talking. And Mr. Walter did.

He shared with me that he was a medic in World War II and during battles their battalion put crosses on their helmets signifying their position. Under the Geneva Convention, enemies weren’t allowed to bomb his area.

“But it didn’t always happen that way,” Mr. Walter said.

I sat quietly, writing and listening, but in the middle of one of his recollections of the Battle of Normandy he blurted out, “And I drove so quick to JCPenney I nearly ran over a pedestrian!”

And so it went for thirty more minutes. Talks of soldiers and battle wounds mixed with Yankees baseball and his daughter’s first communion.

Soon I put my notebook down and resorted to spending the rest of the visit talking with my new friend. I’d have to tell my editor we couldn’t use the interview. The longer we’d spoken, the more farfetched his stories had become.

“I took out an army of men, over one hundred of ’em with my own bare hands!” he said, laughing.

His face lit up as he spoke. It was clear he would fade in and out of conversations. I watched him closely and you could almost see it. He would answer one question precisely and to the point and moments later struggle to find the easiest of words. A nurse walked in during our conversation and she lovingly moved the blanket that lay in his lap to cover his legs. He thanked her by name but minutes later had forgotten she’d come at all.

Before leaving, I thanked him for talking with me, and made my way to the hall. Standing at his doorway, I wished we’d met years earlier.

“Did you see my postcard?” he asked.

“No, I didn’t; show it to me,” I said as I walked over to the framed card beside his bed.

As I picked it up, he told me it was from a woman named Emma.

“She was the most beautiful lady you’d ever laid eyes on. She sent me that postcard on her wedding day,” he chuckled. “She was all dressed up in a white wedding gown, about to say ‘I do’ and when the church doors opened for her to walk down the aisle to meet her groom, she slammed them shut! She ran back home, and sent me that card. She was my best friend growing up. She told me she’d be waiting ’til I got home from the army and we’d get married.”

It was another of his stories. I was sure the postcard was significant in some way, but that was pretty farfetched.

As I pulled out of the nursing home, I called Mr. Walter’s daughter from my car. I told her I’d visited her father and as much as I’d enjoyed talking with him, I couldn’t publish the piece because of his condition.


Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

She was kind and not surprised. She said her father’s dementia had worsened over the last few months. But before we hung up, I told her what her dad said about defeating an army of German soldiers with his bare hands.

“That sounds just like him,” she laughed.

I also went on to tell her about a postcard he’d shown me, and the story he’d shared of the woman, his childhood friend who’d stopped her wedding with minutes to spare and professed her love for him.

There was a pause on the other end of the phone. “Hello?”

“That one is true,” she said, quietly.

She told me of the sixty-two-year marriage between her father and mother and how her mother waited for the soldier she’d always loved to return home from war.

“They had never even been on a first date,” Mr. Walter’s daughter said.

A week later I drove back to the nursing home and visited Mr. Walter again. He told me about Emma in great detail, never once trailing off as I’d witnessed days before. He recounted what Emma had worn the day he’d seen her upon his return, the address of their first home, their family pet, and Emma’s favorite flowers he’d planted along the front porch stoop.

We published his story on the front page of the newspaper a week later. I hand delivered a copy to him.

“Why do you think you remembered so much about Emma, but so little about the war?” I asked.

He sighed, thinking for a moment, then told me, “World War II was a big part of my life, but Emma was the best part.”

 

Author: Amanda Dodson

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Jun 142014
 

father's day blog 2Father’s Day – or any day, for that matter – is not a typical day for Jason.

Jason is a teenage caregiver.

While many young adults of 18 are thinking about final exams and high school graduation parties, Jason Hatke’s mind is looking much further into the future. At age 46, Jason’s father Mike was diagnosed with younger-onset Alzheimer’s disease. Jason was only 13.

There were signs in the years before Jason’s father was diagnosed. In the 6th grade, Jason was in his school classroom viewing a video about Alzheimer’s with his fellow students. Jason immediately recognized the signs of Alzheimer’s shown in the video as behaviors his father had been displaying at home. He breached the topic with his mother Rita. Then, other issues began to surface. Mike’s boss noticed he had been experiencing trouble with his memory, especially in the afternoon hours after lunch. Soon Mike was seeing doctors to figure out what was going on.

Two years and many tests later, the truth was revealed.

Mike received a diagnosis of Alzheimer’s, and it changed the course of Jason’s life.

At 15, Jason became his father’s primary caregiver. Jason chose to step up to the plate, taking on the task of determining his father’s daily needs. With his mother working full-time more than 30 miles from their home, it became Jason’s responsibility to watch over his father. “It’s an everyday struggle,” Jason says. “There are days when my dad doesn’t know if he’s hungry or thirsty. It makes every day very real.”

As with all Alzheimer’s patients, scary situations arise and the reality of the situation is often raw and emotional. Jason manages to keep afloat while growing up a lot faster than his peers. “I feel like I am closer to 35 than 18,” he says. “Support from the Alzheimer’s Association and aid from other caregiver children coping with the disease has offered me a lot of comfort.” Jason has attended a ranch camp twice since his father was diagnosed. This is where he made new connections, supportive friends and where he met his girlfriend, whose father recently passed away with frontotemporal dementia.

Inspired by his father’s strength, Jason become an Alzheimer’s advocate. He has traveled to D.C. alongside his father to ask representatives to make Alzheimer’s a national priority and encourages other young adults to become involved in the fight. He’s learned to “make every single day count.”

Advocating is a passion that requires compassion, much like Jason’s caregiver role. “It is a blessing and a curse,” he says. “I’ve had to figure out who I am quickly, more quickly than my peers. I see the future more clearly, and I’ve learned the advantages of the family unit and how to not take it for granted. Where other people my age are rebelling and turning against their parents, I have learned how to appreciate mine.”

Although Jason feels a strong moral obligation to remain in Indiana to support his dad, he recently enlisted to join the Navy. That isn’t to say that he doesn’t worry about his decision. He does. He worries about the “what ifs.” What might happen when he returns? What if his father doesn’t recognize him?

Like Jason, many caregivers and family members of people diagnosed with Alzheimer’s experiefathers day blog 1nce feelings of guilt. But Jason’s family is encouraging him in his decision and is committed to him pursuing his passions. His father insists that he won’t “weigh Jason down” by insisting that he stay in Indiana. Until Jason leaves for the Navy, he continues to live every day as it comes, taking to heart the many life lessons he is learning from his father — particularly his attitude toward Alzheimer’s. “He decided to step up and fight this disease. He advocates for progress and change and shares his voice on Capitol Hill. I respect my dad so much because of that,” Jason said.

Jason’s work as an advocate is a calling that he plans to continue to pursue beyond his years as a teenage caregiver, because he knows the difference he can make. “Imagine if my situation was your situation. Imagine how helpless you might feel, and how it would make you feel to lose your memory. My family and I advocate for change on the federal level and in our community to change the future for other families. I fight because my dad fights. I fight for those who can’t. Go big or go home.”

About Jason: Jason is sharing his story during Alzheimer’s & Brain Awareness Month in hopes that he can inspire others to get involved with the cause. He currently serves as an Ambassador for the Alzheimer’s Association, recently attending the Alzheimer’s Association Advocacy Forum for the third time. He is also working on launching a dementia website of his own.

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Become an Advocate
Take Action: Tell Elected Officials to Invest in Alzheimer’s Research
Alzheimer’s & Brain Awareness Month

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.

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Oct 312011
 
Scott Russell, Alzheimer's Association Board Member

November is National Family Caregiver Month, and I wanted to share some personal thoughts on the subject of caregivers.   I was a caregiver for my father, who passed away from Alzheimer’s 15 years ago, and I was diagnosed with the disease two-and -a-half years ago.

The past.
It has been almost 25 years since my father started to exhibit the signs of dementia.  Back in those days, Alzheimer’s was not well- known by doctors and certainly the general public.  Our family did not know what was wrong.  Like many caregivers, my mother was frustrated — irritated at his behavior, and at times angry.

My Father did not know what was happening, only that things were not right. He felt emasculated and often resorted to covering up his failings of memory and inability to do simple math (like figuring out the tip after dinner); he became isolated and depressed.

Unfortunately, many friends retreated from him as time went on, as they too, did not understand the disease.  They were afraid.  My father was afraid, too, but hid it well — at least for a while.  I believe that if we had known, had he known, had his friends known, we all would have been MUCH better at dealing with the disease. Of course, knowing is one thing; having the resources available to help people with the disease and caregivers cope is another.

Fast forward to the present.

I was in denial when I was diagnosed with early-onset (also known as younger-onset) Alzheimer’s until I received the diagnosis a second time.  Of course knowing is not easy, and I, too, went through some severe depression as I struggled to cope with its impact.

But now, with resources available through the Alzheimer’s Association, my caregivers (my wife, two sons and extended family) are much better at coping with this disease alongside me.  As a matter of fact, they are FANTASTIC.  And I have gained, too.  I am OPEN about my disease, and when I tell people, they embrace it, they do not retreat.

I am so proud of my family’s support in so many ways. My wife, Amy, has been a huge support for me.  On a daily basis, she reminds me to take my medicine, helps schedule my appointments, and provides transportation since I no longer drive. Amy encourages me to work nearly every day on the things that mean a lot to me, including daily hikes with the dog, exercising at the gym, and most importantly, painting the Alzi Animals (stuffed animals that I buy and paint for donations at Alzheimer’s Association events). Amy is always there to support me regardless of the occasion. I could not make it without her!

My two sons, Josh and Nick, inspire me to make the most out of the quality time I have left.  They encourage me to live the healthy, holistic life that means so much to me and keeps me chugging along.  Together, we hike, snowboard, and whenever we get the chance, play chess to keep my mind active.

For me, the one quality that keeps me happy and maintains my positive outlook on life is my family’s sense of humor!!  Being able to talk about my limitations with humor takes the edge off for me and my caregivers.  Maybe not all families use a sense of humor in their daily lives, but if I had to recommend just ONE thing to caregivers, it would be to use that sense of humor in a positive way, because it can excite the mind, defuse delicate situations, and makes us all smile a bit more every day.

My experience has taught me to embrace this disease, wave the purple flag and ADVOCATE for those who are affected. During National Family Caregiver Month it is especially important to acknowledge and celebrate those caregivers who know and love us, and help us cope with this disease in uniquely personal ways.

Scott Russell is a member of the National Board of Directors of the Alzheimer’s Association and the Alzheimer’s Association 2011 Early-Stage Advisory Group. Diagnosed with Alzheimer’s in 2009 at the age of 60; he is committed to raising awareness about the stigma attached to Alzheimer’s and the need to address this disease aggressively. Scott lives with his wife, Amy, in Ridgefield, Connecticut.  They have two sons, Joshua, an environmental activist (age 27), and Nick, a professional snowboarder (age 23).

Oct 212011
 
9798839_woman

As someone who works for the Alzheimer’s Association with support programs for caregivers, I decided to do a little research today on our Message Boards, where Alzheimer’s caregivers are able to communicate with each other about their concerns and get information and support from peers. For those who have been providing care to someone with Alzheimer’s disease for some time, the result will come as no surprise, but for those who are newer to caregiving, you can turn up a result that may make you curious.

If you go onto our message boards and search the Caregivers Forum with key words, you can pull about 30,000 posts containing the word “Alzheimer’s”, 14,000 that include the word “brain” and 10,000 that contain the word “neurologist.” No big surprises there, but here is the one that may surprise the newer caregivers: If you type in “UTI”, you will pull over 8,000 posts that are on 410 pages of our message boards.

UTIs, or urinary tract infections, can cause changes in someone with Alzheimer’s disease that you might never expect. The impact can be really profound. Some of the titles of the message board threads in which UTIs are mentioned tell the story well, including “Sudden decline,” “Yelling out and undressing in public” and “Manic episodes… WOW!”

Here is a sampling of some of the posts on the topic:

  • “For me, falling and hallucinations always mean check for UTI”
  • “Our compromised elders, especially females often develop, “silent” urinary tract infections. These UTIs are called “silent” because they usually have no symptoms of pain, no burning, no odor, no frequency, etc. BUT there will often be profound changes in behaviors.”
  • “UTI, UTI, UTI, UTI, UTI! When my mother has a UTI she sleeps all day. We can’t get her out of bed, she will also stop eating. Have the doctor check her for a UTI. “
  • “UTI and dehydration!!!!! I’ve never been so happy to get that kind of diagnosis. They have her on IV antibiotics. The interesting thing was that her urine was clear and they were pretty sure she didn’t have a UTI. Luckily the testing came back positive.”
  • “With my aunt, I could always diagnose the UTI because she started acting crazier than her current norm. (When she picked up a glass of water and threw the water over her shoulder, I called it right away —UTI.)”

When UTIs are wreaking havoc with the family members of our Alzheimer’s caregivers, we sometimes see threads in which the caregivers are in a state of panic about the symptoms. And for good reason — the symptoms are powerful and can actually mimic the end of life for some people. These caregivers are used to a slow disease progression, and the UTI with no overt symptoms can make everyone involved act in ways that reflect their feeling that this situation is a life-threatening emergency. The good news is that, while the UTI does need to be treated right away, this is for the comfort of the patient and the family. UTIs do not cause permanent damage, and they respond quickly and successfully to treatment. And best of all, once the infection clears, the person returns back to their condition prior to the UTI.

That’s when the message board posts show caregivers breathing a deep sigh of relief and thanking their peers in the online community for their caring support — and for tipping them off to one of the oddest but most treatable components of Alzheimer’s disease.

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Today’s guest post comes from Ellen Carbonell, LCSW, Associate Director, Family Programs for the Alzheimer’s Association’s national office.  Ellen is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees the caregiver and early-stage support group programs. Trained as a clinical social worker, she has over 30 years of experience working with individual and family programs in mental health, vocational, educational, clergy and voluntary health care settings.

Mar 182011
 

Last month, researchers Francisco Lopera and colleagues reported in the journal Lancet Neurology that they were able to capture a clear decline in cognition starting in people’s early 30s in the largest-known population with autosomal-dominant (inherited) Alzheimer’s disease. They define an earlier disease stage prior to what is called pre-MCI, in effect pushing the line of detectability back toward younger ages by some four years.

Two other papers go in the same direction. Last year in the journal Brain, Mario Parra and colleagues published a new test that appears to detect a specific visual memory deficit perhaps even earlier, at ages when mutation carriers perform as well as controls on standard neuropsychometric tests. And in last December’s Annals of Neurology, Yakeel Quiroz and colleagues report the first of what is expected to be a wave of preclinical brain imaging findings. Carriers in their thirties, while still performing the memory test at hand as well as non-carriers, push their hippocampus harder to achieve that parity.

Together, these three papers push back the preclinical phase of Alzheimer’s that is detected by neuropsychology and imaging. They characterize the 20 to 15 years prior to symptoms of dementia.

Each of the previous familial Alzheimer’s disease studies was small. In this paper by Lopera and colleagues, the Colombian scientists retrospectively analyzed descendents of the largest-known cohort of autosomal-dominant Alzheimer’s, including 1,784 patients age 17 to 70 who came to Lopera for treatment and research between 1995 and 2010. This study is by far the biggest study of its kind. Four hundred forty-nine people carried the mutation. Four hundred ninety-nine non-carriers served to establish normal parameters on the battery of cognitive tests that the scientists administered to the participants at follow-ups every other year where possible. The studies are helping us get a better sense of the continuum of Alzheimer’s disease, from its asymptomatic stage into the mild cognitive impairment/prodromal stage, followed by the well characterized mild, moderate and severe dementia stage.

Michael S. Rafii, M.D., Ph.D.
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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Mar 112011
 

I recently attended an event hosted by the American Heart Association and Go Red Chicago, where a panel of physicians and healthcare providers discussed the effect of diet, hormones and cardiovascular risk factors on the heart and brain. The physicians also touched on emerging data that suggest there may be racial/ethnic differences in the prevalence and effects of cardiovascular risk factors to the development of heart disease and brain functioning in these diverse populations. Thus, I was very interested in reading the following article from Korea that examined the effects of vascular risk factors in mid and late life to dementia risk.

The initial study population included over one million persons aged 30-95 years who participated in at least one biennial National Health Insurance Corporation (NHIC) medical evaluation between 1992 and 1995. The NHIC provides health insurance to government employees, teachers and their dependents and it was estimated that at the time of this study, approximately 11 percent of the Korean population was insured by this organization. Persons were excluded from the study if they reported having cardiovascular disease, cancer, liver disease prior to their initial visit, or if they had missing data on any study variables. Thus the final sample size for this study was 848,505 participants, aged 40 years or older, followed for up to 14 years.

As is typical with many studies focusing on cardiovascular disease, questions regarding history of cigarette use and alcohol consumption were obtained along with height, weight (for body mass index calculations) and blood pressure. Fasting blood samples were obtained for both serum glucose and serum cholesterol. The specific criteria for hypertension were a systolic blood pressure of at least 140 mmHg or a diastolic blood pressure of at least 90 mmHg. Cholesterol was characterized as “desirable” if the serum cholesterol was 200 mg/dl, “borderline high” if it was between 200-239 mm/dl, and “high” if it was greater or equal to 240 mg/dl. Diabetes was defined as a fasting serum glucose level of 126 mg/dl or higher.

As this was a large sample of persons evaluated in clinical hospitals, the main variable of interest was a dementia diagnosis. For these analyses, the dementia categories included Alzheimer’s dementia (AD), Vascular dementia (VaD), and “unspecified” dementia.

Of the 848,505 persons who were evaluated at the baseline examination, there were 358,060 women (age at baseline 53.6 yrs) and 490,445 men (age at baseline 51.9 yrs). The entire population had a low level of body mass index. Both cigarette smoking and alcohol consumption were more common in men compared to women. During the 14 years of follow up, 3,252 persons were hospitalized for issues related to dementia; the majority of those dementias were listed as Alzheimer’s. Increasing dementia incidence of Alzheimer’s was noted as age increased, peaking at the ages of 75-80 years, then decreasing at older ages.

In both women and men, diabetes was associated with all types of dementia, and appeared to be higher for VaD than Alzheimer’s in women. Hypertension (HTN) was also associated with all dementias; strongly associated with VaD in men, but did not appear to be associated with Alzheimer’s in women. In both groups total cholesterol was not associated with dementia.

Further analyses were conducted measuring the impact of vascular risk factors measured in midlife (<65 years old) compared to later (>65 years old). Diabetes appeared to be associated with Alzheimer’s in both the younger and older age groups for men, whereas smoking was associated with Alzheimer’s in midaged men (< 65 years) compared to older men (> 65 years). HTN had a strong association with VaD in both men and women before and after 65 years old. There were no notable interaction effects between HTN and diabetes on the risk of dementia for either gender.

This study in the Korean population supports data from Western population studies, suggesting that diabetes and HTN are important risk factors for the development of both Alzheimer’s and VaD. Further, this large study also suggests that vascular risk factors in midlife appear to have a higher risk for dementia development as compared to later risk factors. One limitation of the study, as noted by the authors, was the relatively high rate of “unspecified dementia cases” (36 percent for men, 39 percent for women) which could affect the strength of these associations. Nevertheless, this study provides support that there is an increased risk of dementia associated with these factors in this Asian population, and highlights the need for aggressive vascular risk reduction treatment as a dementia prevention method.

Thanks for reading.

Neelum T. Aggarwal, M.D.
Steering Committee Member, ADCS
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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Mar 012011
 

Dear Readers,

As I discussed in an earlier blog post this month, the association between behavior and/or personality traits to developing dementia is a growing topic of interest that I am asked to discuss frequently. Depression, in particular, arouses a lot of interest, as many studies have shown an association between depression and poor physical, social and cognitive functioning. The latest study from the Women’s Health Initiative Memory Study (WHIMS) examined whether depressive symptoms in post menopausal women would increase the risk of developing mild cognitive impairment and/or dementia.

The Women’s Health Initiative (WHI) is a multisite population-based study that assessed the risk and benefits of hormone therapy in healthy postmenopausal women. The WHIMS, was designed to examine the effect of post menopausal hormone therapy on cognition and memory in healthy women aged 65 and older at the study baseline. A total of 7,497 community dwelling post-menopausal women were enrolled in WHIMS. They were aged 65y to 79y at enrollment and were free of Mild Cognitive Impairment (MCI) and dementia. Analyses for this study were based on the 6,376 ( 85%) WHIMS women who completed: (1) a six item Center for Epidemiologic Studies Depression Scale (CES-D), (2) a two item National Institute of Mental Health’s Diagnostic Interview Schedule (DIS) and (3) attended at least one follow up visit.

Typical questions asked on the CES-D were whether (1) the participant felt depressed (blue or down), (2) had restless sleep (3) enjoyed life (4) had crying spells (5) felt sad and (6) felt that people disliked the participant. The two questions from DIS asked whether in the past two weeks or more if the participant felt sad, blue or depressed and whether if they had for two or more years feelings of depression/sadness. Other baseline data included demographic information, medical history, lifestyle variables including physical activity and body mass index (BMI). Cognitive testing was measured using the Modified Mini Mental State Examination (3MS) at baseline and yearly after that.

The protocol for assessing MCI and dementia was divided into four phases that included administering to all participants a screening exam for cognition, a more in-depth cognitive battery, and then an assessment by a physician experienced in diagnosis dementia. If a participant was suspected of having dementia, they underwent the typical “work up” for dementia and that included a brain scan and laboratory blood tests. The physician then provided the final diagnosis of the type of dementia.

Of the 6,376 women included in these analyses, 508 met criteria for having depression. Women with depressive disorder were more likely to be African American, widowed, separated or divorced; had lower education, income, and global cognitive function. A total of 216 participants (3.4%) developed MCI , 102 (1.6%) developed dementia of any type and 285 (4.5%) women developed MCI or probable dementia during follow up. Those women who had depressive symptoms at baseline, were found at follow up (mean 5.4 years) to have a greater risk of developing subsequent MCI and incident dementia compared to those who were not depressed. These associations did not change after controlling for lifestyle variables, cardiovascular risk factors, cerebrovascular disease or antidepressant use.

Few population based studies have examined the association of depression to development of MCI and dementia in women. This study is the first to examine these associations in a large group of post menopausal women. Other notable strengths of this study include its large and multiethnic sample size, drawn from diverse communities across the US. These findings suggest that depression may indeed be a risk factor for dementia in women, and that adequate screening and possible intervention may prevent the onset of cognitive decline and dementia.

Here are 3 articles you can refer to for learning about this particular study or the latest research on depression, women and cognitive impairment:

Goveas JS, Espeland MA, Woods NF et al: Depressive Symptoms and Incidence of Mild Cognitive Impairment and Probably Dementia in Elderly Women: The Women’s Health Initiative Memory Study. J Am Geriatr So 59: 57-66, 2011

Dal Forno G, Palermo MT, Donohoue JE et al. Depressive Symptoms, Sex and Risk for Alzheimer’s Disease. Ann Neurol 2005; 57: 381-387

Yaffe K, Blackwell T, Gore R et al. Depressive Symptoms and Cognitive Decline in Non Demented Elderly Women: A Prospective Study. Arch Gen Psychiatry 1999; 56: 425-430

Thanks for reading.

Neelum T. Aggarwal, M.D.
Steering Committee Member, ADCS
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

Feb 102011
 

Dear Readers,

I often am asked about whether behavioral or personality “traits” are related to cognitive functioning. Specifically, can they “predict” if someone will transition from mild memory trouble ( i.e. Mild Cognitive impairment-MCI) to dementia? Part of this question was addressed in a recent article by Chan and colleagues in the American Journal of Psychiatry.

Participants in this study came from an ongoing epidemiological survey on MCI and dementia conducted in Hong Kong. In Phase 1 of this study, a total of 6100 persons were given the Cantonese version of the Mini Mental State Examination (MMSE) and an abbreviated subjective memory inventory for the Chinese (AMIC). Persons who had scores above the cut of dementia but with memory complaints were invited to participate in Phase 2. These persons were then evaluated by a geriatric psychiatrist, had additional cognitive testing performed to ascertain the Clinical Dementia Rating (CDR) score and were diagnosed with MCI (based on the Peterson criteria) or having no cognitive impairment. Neuropsychiatric symptoms were assessed using the Chinese version of the Neuropsychiatric Inventory (NPI). As is typical with the NPI, symptoms evaluated included a variety of behaviors such as delusions/hallucinations, agitation/aggression, depression, anxiety, euphoria/elation, apathy/indifference, changes in motor behavior, night time behavior disturbances and changes in appetite and eating behavior.

Of the 788 persons who participated in this study, 388 were classified as having MCI and the remainder had normal cognitive function. The MCI group was older (74.5 y vs. 70.2y), had a higher preponderance of women, and had less education (3.6 y vs. 5.6y) compared to the normal cognitive function group. Roughly 36% of those with MCI and 29% of those with normal cognitive function exhibited one or more neuropsychiatric (NP) symptoms. Analyses were done to determine whether having neuropsychiatric symptoms predicted MCI or normal cognitive status. Although nighttime behaviors, apathy and anxiety were the commonest symptoms among persons with mild cognitive impairment (MCI), agitation, apathy and irritability were more prevalent in persons with MCI compared to persons with normal cognition.

Few population based studies have examined the association of behavioral symptoms to the prevalence of NP symptoms in a group of community dwelling older persons and even fewer have addressed these changes in racially and ethnically diverse populations. This study attempts to shed more detail on the behavioral symptom profiles of persons with MCI. The fact that some of the behavior symptoms were noted in the MCI group and not in persons with NCI may suggest that these behaviors are related to specific cognitive deficits.

Thus, NP symptoms could be thought of as a non cognitive marker of MCI and in turn could alert the health professional that a cognitive deficit may be present, which with progression, would lead to a impaired cognitive and motor function, caregiver burden, and worsening of quality of life. More studies, such as this one are needed in the Asian community which may in turn facilitate earlier treatment of cognitive impairment in later life.

Here are three articles you can refer to, to learn about this particular study or the latest research on behavior symptoms and mild cognitive impairment:

Chan WC, Lam L, Tam C, et al. Prevalence of Neuropsychiatric Symptoms in Chinese Older Persons with Mild Cognitive Impairment- A Population Based Study. Am J Geriatric Psychiatry 2010

Lam C, Tam WC, Lui WC et al: Prevalence of Very Mild and Mild Dementia in the Community Dwelling Chinese Older Persons in Hong Kong. Int Psychogeriatrics 2008

Lyketsos CG, Lopez O, Jones B, et al: Prevalence of Neuropsychiatric Symptoms in Dementia and Mild Cognitive Impairment: Results From the Cardiovascular Health Study. JAMA 2002; 288: 1475-1483

Thanks for reading.

Neelum T. Aggarwal, M.D.
Steering Committee Member, ADCS
This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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