Wednesday, June 30, 2010

Find me at http://dementiawareness.com

That's right! I've purchased my own domain: dementiawareness.com You can find me there, from this day forward. I'm in the process of moving in and setting up shop, so please let me know if you notice anything amiss.

Thanking you in advance,
Amber Smith

Wednesday, June 23, 2010

A call for mainstreaming people with Alzheimer's; 'what's the harm in that?'

As soon as a person is diagnosed with dementia, friends often disappear--even quite early on when the person is just a bit forgetful.

"They think it might all be a bit too awkward," Julian Hughes says of the friends.

"But attitudes must change. Those friends can adjust, let the conversation go with the flow, accept the person with dementia may be living within a few minutes of experience, so you may have to repeat your stories. But what's the harm in that? If they are enjoying it, then it's still a meaningful experience."

Hughes is a British psychiatrist who specializes in aging--his academic interest is the notion of personhood--and recently he spoke throughout Australia, calling for mainstreaming of those with Alzheimer's and other dementias and for governments to recognize this significant health issue. He also made the point that research funding for Alzheimer's lags hugely behind other areas, such as cancer. "As the numbers (of diagnosed) rise, funding will need to increase by a factor of six to eight times to keep pace," Hughes points out.

Dementia is the third-leading cause of death in Australia, behind heart disease and stroke. About 257,000 Australians have dementia today, and that's expected to rise to more than a million by 2050.

In America, deaths from Alzheimer's disease are almost equal to those from diabetes, and both rank below heart disease, cancer, respiratory disorders and accidents. But that's expected to change in the coming years, as Baby Boomers begin hitting age 65. Today, 5.1 million Americans have Alzheimer's disease; that number will climb to 13.5 million by 2050, says a report from the Alzheimer's Association, which says the costs of care will inevitably rise, too, from $172 million today to more than $1 trillion by 2050.

Monday, June 21, 2010

Apple juice found helpful for those with Alzheimer's disease

Behavioral and psychotic symptoms related to dementia seem to improve when people with moderate-to-late stage Alzheimer's disease regularly drink apple juice.

That's what researchers from the University of Massachusetts found in a study published in the June 2010 issue of American Journal of Alzheimer's Disease and Other Dementias.

For their study, the researchers assigned 21 individuals with moderate to severe Alzheimer's disease to drink a 4-oz glass of apple juice twice a day for one month.

Though caregivers reported reduction in anxiety, agitation and delusion, the individuals with dementia showed no changes in the Dementia Rating Scale.

Previous studies have suggested that apple juice may provide health benefits including reduction of central nervous system oxidative damage, suppression of Alzhiemer's symptoms, improved cognitive performance and more organized synaptic signaling. Thomas Shea says other researchers have shown similar effects with blueberries. "We have also shown similar effects with purified vitamins and nutriceuticals." Shea is professor of biological sciences and Director of the Center for Cellular Neurobiology & Neurodegeneration Research at Massachusetts.

Would apple juice be helpful in people with other dementias?

"We saw in mice that apple juice boosted neurotransmitter production, so it might help us all with mood, and the major effect would be seen on those individuals, disease or not, that had behavioral issues," he says. "However, it is certainly worth a try."

Shea says he would like to compare apple juice with apple cider in another study because "cider has the potential benefit of being fresher, and less processed."

Friday, June 18, 2010

Donate for Memory Walk through DementiAwareness, get your loved one on this blog

While I'd love to have a huge group of people walking together at Long Branch Park Oct. 2 for the Alzheimer's Association's Memory Walk, I know that life sometimes gets in the way!

If you'd like to join us, but can't, let DementiAwareness walk in honor or memory of your loved one. Make a donation of $50 or more through our team, and we'll post your loved one's photo on this blog through the end of October. (See my example at left.)

Now, if this recession is hitting you like it's hitting me, you may appreciate this reminder: participation in the Memory Walk is free. You can raise awareness regarding Alzheimer's and other dementias just by showing up--and that costs only your time.

Honoring Dads who are being stolen by dementias

Since I really could not have said it better myself, I'm turning my blog over to Loren B. Shook in honor of Father's Day. He is president and chief executive officer of Silverado Senior Living. My Dad residents in one of Silverado's 34 facilities. Here's Mr. Shook:

All of us fortunate enough to grow up with loving fathers are who we are today thanks to the lessons they taught us. Whether it was how to fish, ride a bike, or throw a baseball, or the values of hard work, integrity, kindness and strength, what Dad showed us decades ago remains at our core.

As one who works with the memory-impaired, I believe the growing number of now-elderly fathers whose memories are disordered are teaching us a new kind of lesson. Understanding this lesson can resolve the anguish many of us so-called "adult children" of those with Alzheimer's disease are feeling as Dad's recognition of us and his ability to communicate slip away.

It's the lesson of selfless love.

Time and again, I hear the same question from sons and daughters: "Why should I visit Dad if he doesn't know who I am and if he won't remember I was there?" Written out, it sounds shocking, but when spoken, it's always tinged with profound sorrow and hurt. It's understandable. When a father is so much a part of your own being, who are you if he no longer knows you?

My answer is always this: Your father needs you now more than ever, and what he needs from you is simpler than ever, too. Because the greatest pleasure you can give your father now is the gift of your time and your presence. You see, the worst pain suffered by the memory-impaired comes from their sense of loneliness and worthlessness. Just as you may feel that your father's condition has come between the two of you, he feels increasingly isolated from the world and from the things that have always mattered. It's no wonder that depression goes hand-in-hand with memory impairment, and sadly, it further aggravates health, both emotionally and physically.

While your dad might no longer realize who you are or greet you by name, it's more important than ever for you to spend time with him. Just being at his side brings him greater joy than you can likely even imagine. He may not be able to express this pleasure in a way that you understand, or that the world at large comprehends, but without a doubt, he feels it and he feels that he is loved. In this way, you are nourishing his spirit, and the value of this is indescribable.

So I encourage you to take the occasion on Father's Day to honor your dad in this way. Whether he resides in a senior care community or is receiving care in his own home, visit him and stay by his side for a while. Even if you can't have the kind of conversation you used to have, there are still ways to make the time together meaningful.

The great thing is that they're simple. If he has always loved a certain kind of music, bring a CD of it and listen to it with him. Those fishing trips and baseball games Dad took you to when you were a child? If you have pictures of them, go through them. Long-term memories are more durable than short-term in the memory-impaired, and I am certain he will enjoy looking through those photos with you. Even a box of candies that he has always fancied can brighten his day.

Yes, I know, after you leave you will have no assurance that he will remember that you were there.

But understand that it doesn't matter.

What matters is that during the time you spent with him, he knew he was loved, and that intangible emotion will definitely have a lasting positive impact on him.

The longer that I work with those with memory-impairment, the more clearly I understand the importance of something that I once heard: that it's when you give a gift selflessly that you will get the most in return. When you give your love selflessly to your father, not only will he benefit, but you will, too. You strengthen his spirit and your own.

So you see, your dad is still teaching all of us a very important lesson.

Thank you, Mr. Shook.

Make a $250 Memory Walk donation, and your busienss gets an ad on this blog

If your company makes a donation of at least $250 to the Alzheimer's Association 2010 Memory Walk through my DementiAwareness team, here's the deal: I'll give your company an ad on my blog from now to the end of the year -- free.

This is the primary fundraiser for the Alzheiemer's Association, with a series of Memory Walks taking place throughout the country. Ours here in the Syracuse area is a 3-mile walk starting at 9:30 a.m. Saturday, Oct. 2, at Long Branch Park.

I'm honored to be asked to serve as honorary chair.

If you don't know someone with Alzheiemer's disease or another dementia, or someone caring for a person who is afflicted, chances are very good that you will in your lifetime. And more than one.

A growing number of people are dealing with a dementia, either as patients or caregivers. More than 5.3 million Americans have Alzheimer's, which is thought to only represent 60 to 80 percent of all dementias. It's a disease that affects primarily older people. And with the first of the Baby Boomers turning 65 in 2011, many health experts are saying we are not adequately prepared.

One of my roles as honorary chair of the Memory Walk is to make sure businesses understand the impact this disease has on their workers. It's profound. Sure, there are signs and symptoms of Alzheimer's, but often it sneaks up before a family realizes their matriarch or patriarch is so afflicted. One day, a dutiful daughter is a hard-charging career woman, and the next, she's struggling to take the car keys away. Caregivers are thrust into a role that is, quite simply, overwhelming. The stress is constant and can be debilitating. (Read more of my blog for multiple posts by and about caregiver issues.)

This disease is not just a personal medical issue. It is already making a huge impact on our nation's health care system and the insurance industry--the cost of the disease is estimated at $20.4 trillion over the next 40 years, by the way. Businesses large and small are impacted not only in increasing health costs, but in worker absenteeism when one must care for a loved one.

Donations to the Alzheimer's Association go toward care, support and research. Dollars raised at the Syracuse Memory Walk stay right here in Central New York. Remember, if you donate through DementiAwareness, I'll put your ad on my blog through the end of the year. (The sooner you donate, the longer your ad appears!)

Need more information? Email Amber Smith at amberink@twcny.rr.com with "Memory Walk" in the subject line. Thanks!

Thursday, June 17, 2010

Finding a link between PTSD and dementia raises the question of why

Male military veterans with PTSD were found to have a nearly 2-fold-higher risk of developing dementia, compared to those without post-traumatic stress disorder, an anxiety disorder that is highly prevalent because of combat. Results of a study into this link are published in this month's Archives of General Psychiatry.

The study involved 181,093 veterans 55 years or older without dementia from 1997 through 2000. Between 2000 and 2007, researchers discovered 17 percent of the men developed dementia, according to the abstract by Dr. Kristine Yaffe and colleagues at the University of California, San Francisco, and San Francisco Veterans Affairs Medical Center. They presented their work last year in Vienna at the International Conference on Alzheimer's Disease.

"Mechanisms linking these important disorders need to be identified with the hope of finding ways to reduce the increased risk of dementia associated with PTSD," they write. Some theories: that PTSD contributes to the cause of dementia, that chronic stress plays a role, or that stress damages the hippocampus or cause alterations in neurotransmitter and hormone levels that could precipitate dementia.

Finding a link between PTSD and dementia was not entirely surprising. "We already know that traumatic brain injury and certainly chronic stress increase the risk of cognitive decline and what this paper refers to as 'accelerated aging,' which may in turn lead to early dementia. So it makes sense that PTSD would increase the risk for dementia in the long run," Maria C. Carrillo, a senior director for the Alzheimer's Association, told Medscape.

Wednesday, June 16, 2010

New York's new 'gold alert' is like 'Amber alert' for adults with dementia

New York has a new "gold alert" alert system for vulnerable and elderly adults, with passage by the Senate of legislation sponsored by Senator David J. Valesky (D-Oneida.)

“Too many lives have been lost as a result of adults with cognitive impairment wandering from home,” the senator says in a news release. “The Gold Alert puts their safety, and the peace of mind of their families, at the forefront.”

Searching for lost adults with dementia is nothing like searching for lost children.

The legislation builds on the existing statewide Amber Alert system used by law enforcement to alert the public to missing children.

The Alzheimer’s Association says more than 60 percent of people with dementia will wander away from home at some point. Studies have shown that 50 percent of those who are not found within 24 hours are at serious risk for injury or death.

In order to prepare local officers for gold alerts, the new program will develop training for law enforcement that helps investigators identify and manage cognitively disabled adults. In addition it creates a toll-free 24-hour hotline that residents can use to report a missing loved one.


Read about the legislation, which included other quality of life measures for seniors.

Read Valesky's news release.

Please join me at the Syracuse Memory Walk Oct. 2 to raise money for Alzheimer's

The main fundraiser for the Alzheiemer's Association is a series of Memory Walks that take place throughout the country. The one in the Syracuse area happens at 9:30 a.m. Saturday, Oct. 2, at Long Branch Park. I'm honored to be asked to serve as honorary chair.

This 3-mile walk raises money for Alzheimer's care, support and research right here in Central New York. Please, join my team. It does not cost anything to walk. Of course, walkers are most welcome to make a donation of any amount. (Donate or raise $100, and you earn a 2010 Memory Walk T-shirt.)

Sign up here to join my DementiAwareness team.

You may make also make an online donation--and know that any amount is appreciated.

If you can't make the Syracuse walk, four other Memory Walks take place in September in the Central New York region, including St. Lawrence, Jefferson-Lewis, Southern Tier and Mohawk Valley.

Monday, June 14, 2010

Locating genes for clues to Alzheimer's risk, cause, diagnosis


Neuroscientists have zeroed in on some target genes that may be tied to the development of Alzheimer's disease, and they've shown what abnormalities appear on brain scans of people with these genetic variations.

Both bits of scientific progress are incremental steps toward understanding what causes the disease that afflicts more than 5 millon Americans. The study, lead by researchers in Boston and Cambridge, Mass., England and Wales, appears in this month's Archives of Neurology.

"The drought of genetic findings in Alzheimer's disease has lasted a long time," write scientists based in London and Wales in an editorial accompanying the Archives study. "These findings, and the genome-wide studies that presaged them, mark a new period of optimism for those of us who study the etiologies of complex diseases of the nervous system."

The study explains the association researchers made between genetic loci that are related to Alzheimer's disease and neuorimaging measures that are related to disease risk. (These measures include the volume of the hippocampus, amygdala and other brain structures.) They identify B1N1 and CNTN5 as additional specific locations of genetic variants on chromosomes, but say their findings warrant further study.

Just one genetic variant, known as APOE, has been shown to influence Alzheiemer's disease risk and age at onset, lead authors Drs. Alessandro Biffi and Christopher Anderson write in their background information.

Study participants included 168 people with probable Alzheimer's, 357 people with mild cognitive impairment, a precursor to Alzheimer's, and 215 people who were cognitively normal. "Our results indicate that APOE and other previously validated loci for Alzheimer's disease affect clinical diagnosis of Alzheimer's disease and neuroimaging measures associated with the disease," they write.

Will that bring us closer to genetic tests for Alzheimer's?

Somewhat, John Hardy, of the University College London Institute of Neurology, says in an email, "but I think this genetic determinism argument is oversold, frankly.

"About 5 percent of the population are at high risk. About 30 percent of the population are at a moderate risk, and about 65 percent are at lower risk. These numbers are little changed by the new data. And, this is not really so useful for genetic testing."



Read the study in the Archives of Neurology.

The National Institute on Aging's fact sheet on Alzheimer's disease genetics.

Friday, June 11, 2010

What is it like to have dementia?

What's it like for Dad, I've often wondered. Is he frustrated, trapped in a body with a malfunctioning mind? Does he understand that he is deteriorating? Did he, at the beginning?

Would I know, at the beginning, if I were to develop Alzheimer's? I don't want to suffer with a dementia; could I create a way out for myself now, in the event I lose my mind later?

That was one of the main character's thoughts in Lisa Genova's heartbreaking/inspiring/terrifying novel, "Still Alice." A neuroscientist, Alice Howland develops early-onset Alzheimer's disease. (The paperback, published by Pocket Books, sells for $15.)

It's a compelling question: What is it like to have dementia?

So when I got an email from WebMD with that subject line, I had to read more.

Writer R. Morgan Griffin does a good job of explaining how caregivers help themselves, and their loved one, by understanding what the disease is like for the person who has it. An excerpt:


Some people think of memory loss superficially, as merely forgetting words or names. But it’s much more profound than that. Everything we do is premised on memory. When you walk into the kitchen to make dinner, your actions are almost unconscious. You grab food from the fridge, turn on the oven, take out plates and silverware – your memories are a foundation, and they give you a context for what you’re supposed to do in a given situation.

For a person with dementia, that context is ripped away. A woman with Alzheimer’s disease may walk into a kitchen and have no idea why she’s there or what she’s supposed to be doing. She might still be able to make dinner – especially in the early stages of the disease – but it’s a struggle. Each step has to be reasoned out and thought through. That’s why people with dementia tend to act more slowly than they once did.


The rest of the article is full of additional observations and explanations. Read it, and you'll find yourself saying, "so that's why my Mom does..." or "that explains why Dad did..."

Understanding dementia from a patient's point of view can make caregiving less frustrating. Knowing the patient personally is important, too.

We fretted over how to convince Dad that he needed to live in a memory care facility. Stubborn and independent, he was unlikely to admit he needed help, that it was for his safety. Tell him he had dementia and he'd appear quietly stunned--and you could not tell if he was processing the information, angry about it, or considering what those words meant. But he was still Dad.

The facility we were considering, Silverado, had a calendar of events planned for the residents, and one of the outings was to the State Fair of Texas. Since Dad had run the midway there for years, we figured that would be an ideal day for Dad to visit Silverado. He knew Silverado was for people with various types of dementia, and he knew the residents would need help getting around the fairgrounds. He found a purpose in acting as their guide. Soon he began believing Silverado was where he worked--he returned home in the evenings to sleep at first--and the staff kept him busy stuffing envelopes and such. When I'd call, he answered the phone as he always had answered his work phone: "Cleveland Smith, may I help you?"

It broke my heart. But, I recognized Dad had found a way to cope with his diagnosis. So had we. We joined reality with his reality, and together we were understanding what it is like to have dementia.

Read more from Amber Smith, "What would Dad say about this blog?"

Read Bruce Bane's blog about living with dementia: "He Reminds me of my Dad."

Read the WebMD story, "What is it like to have dementia?"

Tuesday, June 8, 2010

Cases of doggy dementia go undiagnosed

Dogs get dementia, too.

It's called canine cognitive dysfunction.

And it's especially interesting, from a research point of view, because canine brains more closely resemble human brains than those of laboratory rats. Also, since so so many dogs are members of human families, they are subject to many of the same environmental factors as humans.

Most senior-age dogs with dementia go undiagnosed, according to a recent study in The Veterinary Journal. Veterinary scientists at the University of Sydney studied 1,000 dogs and found 14 perent had dementia. Only about 2 percent had been diagnosed. (Researchers found no appreciative difference among breeds, by the way.)

''Like dementia in humans, canine dementia often ruins the bond between the sufferer and their carer because the dog no longer seems to recognise the owner or may develop annoying habits,'' Hannah Salvin, a doctoral student at the university who led the study, told the Sydney Morning Herald.

As with humans, the disease is incurable.

Some treatments are emerging, though, and associate professor Paul McGreevy told the newspaper "their responses could provide us with pivotal information about the potential therapeutic effects in humans.''

Salvin and McGreevy are interested in studying more dogs in the greater Sydney area. Their website, maturedogs.com, provides details.

Symptoms

Pacing, circling, wandering.

Failure to recognise familiar people or pets.

Walking into walls or furniture.

Standing over water bowl, not drinking.

Avoiding being petted or touched.

House soiling.

Lynn Lazarus Serper brings 'Serper Method' to Syracuse

Lynn Lazarus Serper--involved in groundbreaking work on learning programs to maintain and improve brain health and vitality--presents "The Serper Method" with communication strategies and learning activities at a conference in Syracuse June 10 and 11.

Her appearance is part of Upstate Medical University's 22nd annual Alzheimer's Conference, designed for families, caregivers and health care professionals who care for people with Alzheimer's or other forms of dementia.

Registration for both days is $95 for caregivers, $115 for health care professionals and $140 for doctors.

Monday, June 7, 2010

The words my heart cannot express

I'm not someone who cries. Well, at least not unnecessarily.

Maybe I lost that propensity through paramedic training, an unspoken lesson in developing professional demeanor. Maybe the cynicism of a career in the news business did this to me. At any rate, it's unusual for me to cry.

But lately, unexpectedly, my eyes will fill with tears. I do not need to be thinking of my Dad for this to happen, though the tears immediately remind me of him and his existence/life at his memory care facility. I miss him so much, though he is not entirely gone. He is slipping away or fading, as I've heard it called. I say he is stuck between the here and the hereafter.

It was October 2008 when I toured the facility where he would move a few weeks later. The administrator was kind enough and spoke knowledgeably about long term care. He showed us around. Silverado's single-floor building was designed to allow for wandering safely. At meal times, residents could exit their rooms and turn left or right and either way, the hallway would eventually feed them into the dining room. Outdoors, the pathway terrain alternated from pavement to gravel, giving residents the perception of traveling further than reality. There were spots for gardening, a cage full of parakeets and canaries, a juke box, and, best of all, dogs who lived there.

The tour began to feel a little like the tours of day care centers I'd taken not too many years before when my children were babies. Directors of day cares similarly touted their centers' features, policies and various activities.

The Silverado administrator let us peek at some rooms, and then he pointed out the memory cases on the walls outside of each resident's room. These were glass-enclosed shelves similar to shadow boxes, but bigger, and they reminded me of the cubby space at daycare that parents are invited to personalize with photographs and mementos.

Before I knew what was happening, I was sobbing, crushed by the thought of the memory case that would be my Dad's. He was 68 years old. How were we supposed to boil his life down to three shelves?

I cried, but I quickly composed myself. Just as I do now whenever my eyes start watering.

"There is a sacredness in tears.
They are not the mark of weakness, but of power.
They speak more eloquently than ten thousand tongues.
They are messengers of overwhelming grief...and unspeakable love.”
--Washington Irving

Sunday, June 6, 2010

Research into cognition explains some age-related memory loss

You really can't teach an old dog new tricks. Well, not if you expect the dog to remember the trick.

Through research into cognitive decline, scientists have demonstrated that "there is a biological reason why people cannot learn new things at an older age, but can retain knowledge learned years before," says John Morrison, dean of basic sciences and the graduate school of biological sciences at Mount Sinai School of Medicine.

Certain types of specializations on nerve cells called "spines" are depleted as someone ages, causing cognitive decline in the part of the brain mediating the highest levels of learning, he explains in a study published June 2 in the Journal of Neuroscience.

We lose certain spines as we age, but this study explains which ones and how their loss impacts cognition--which may lead scientists to develop new therapies that target age-related cognitive decline.

The research team studied six young adult and nine older rhesus monkeys as they participated in a delayed response test. The monkeys watched as food was baited and hidden. Then a screen was put in front of them so they could no longer see the location of the hidden reward. At the beginning of the test, the screen was raised immediately, and the monkeys found the reward right away. The memory of the monkeys was tested by increasing the time the reward was blocked from view. The aged monkeys performed significantly worse on the tests than young monkeys, especially as the time intervals increased, researchers reported.

They then studied the microscopic changes in the nerve cells within the prefrontal cortex, an area of the brain that mediates high level learning. Nerve cells in this area contain both thin, dynamic spines which are key to learning new things, as well as large, mushroom-shaped spines that likely mediate long-term memories and expertise. The older monkeys lacked the thin spines but retained the larger spines, "indicating that the loss of the thin spines may be responsible for monkeys' inability to learn and retain information during the test," says a news release from Mount Sinai.

Friday, June 4, 2010

An extended family, a photographer's studio and a camera


We gathered for what we knew would be our last formal family portraits. It was Thanksgiving 2008, just after Dad had officially moved into a memory care facility. His wife, two children and six grandchildren donned clothing in matching shades of navy and khaki and directed him into a photographer's studio.

Dad was in decent spirits that day. He would generally sit where he was asked and smile when he was told. In the midst of the sitting, my then 11-year-old son held my point-and-shoot camera--and snapped this photo of his Grandpa.

It became my favorite after my son explained why he took it: because Grandpa looked as if he was looking for something and didn't know what.

Thursday, June 3, 2010

A curious study of Agatha Christie and Alzheimer's -- and how our writings may one day be used for diagnosis


The language of people with Alzheimer's disease includes significantly more indefinite words and repetitions than the language of healthy people of similar age and level of education.

So, an English professor at the University of Toronto, Ian Lancashire, analyzed the writing of British mystery writer Agatha Christie.

Previously, the works of British novelist Iris Murdoch were analyzed for signs of the Alzheimer’s disease that was confirmed after her death. Science Blog reported in 2004 that "while the structure and grammar of Murdoch's writing remained roughly consistent throughout her career, her vocabulary had dwindled and her language simplified in her very last novel."

Christie was never diagnosed with Alzheimer's. She continued to write in her final years, though some people believed she suffered from dementia.

Lancashire says her 73rd book, "Elephants Can Remember" is universally dismissed by critics as being full of errors and poorly plotted. The main character is a female novelist who struggles with memory loss while trying to solve a crime that happened in the past.

The professor told National Public Radio that when he read the book, he felt Christie was sensing what was happening to her, and that she kept writing "struck me as heroic."

His study involved feeding the text of 16 of her novels into a computer program that analyzed the vocabulary for the frequency of different words and the number of different words in each novel. "The richness of the vocabulary of Christie’s novels declines with her age at composition. The three novels that she wrote in her 80s, (Nemesis, Elephants, and Postern of Fate,) have a smaller vocabulary than any of the analyzed works written by her between ages 28 to 63," he writes.

Christie was 81 when she wrote the Elephants novel. Her use spiked of what Lancashire called indefinite words--"thing," "anything," "something," "nothing." At the same time, the number of different words Christie used dropped by 20 percent. "That is astounding," Lancashire told NPR. "That is one-fifth of her vocabulary lost."

Most of us don't have large collections of writing done over the course of our lives. But Lancashire points out in his conclusion that "this will begin to change as more individuals begin to keep, if only by inertia, a lifetime archive of e-mail, blogs, professional documents, and the like.

"While the diversity of topics and genres in such an archive brings methodological problems to the analysis ... we can nonetheless foresee the possibility of automated textual analysis as a part of the early diagnosis of Alzheimer’s disease and similar dementias."

Wednesday, June 2, 2010

What's in a name?

Both my first-born and my brother's first-born children have the same middle name as their grandfather: Cleveland.

It's an old family name.

A paternal uncle with a few "greats" before his name was Grover Cleveland, who was the 22nd and 24th president of the United States. He died just over 100 years ago, in 1908. He spent part of his boyhood growing up in Fayetteville, NY, and I drive by Academy Street where his former home still stands almost every day.

Look at the pictures of Cleveland, the president, and compare the stately way with which he holds his head with the looks of Cleveland, my Dad in this picture taken at Silverado Senior Living where he has lived since October 2008.

President Cleveland was a lawyer and a long-time bachelor. He served as mayor of Buffalo and governor of New York before becoming president, and so far he is the only president to serve two nonconsecutive terms. Historians say he was known for his laser-sharp focus, and they say he was at first ill at ease with the niceties of life in the White House. He's described as "honest, fearless and hard working," in the 2006 Scholastic children's book, "Grover Cleveland."

One of the many Grover Cleveland biographies says much about the man with its title, "Grover Cleveland: A Study in Character," by Alyn Brodsky. The book quotes another biographer who calls Cleveland a paradigm of honesty, integrity and resolution who acheived greatness through strength of character; a man who, though flawed, exemplified "courage that never yields an inch in the cause of truth, and that never surrenders an iota of principle to expediency."

Of course, strength of character isn't necessarily handed down through generations, though I'd like to think it is. And I realize that many people hold their bodies square and firm for portraits, making them no more or less "stately" than either Cleveland. Still, I like to think we can trace some traits through our lineage.

Is/was my Dad honest and hard working and principled because his namesake was? Have my son and nephew inherited those traits, too? Sometimes I fret about what their genes hold: the same frontotemporal dementia that afflicts my Dad? Or something benign, like fearlessness or laser-sharp focus, even an aptitude for the law?

Tuesday, June 1, 2010

Factors that may increase risk

Four factors are associated with an increased risk for Alzheimer's disease and cognitive decline. They are not necessarily causes, but science has noticed some meaningful connection between these things and an increased risk for Alzheimer's and cognitive decline. They are:
* diabetes,
* the gene variation ApoE,
* current smoking, and
* depression.

Evidence is not as strong for a connection between estrogens or nonsteroidal anti-inflammatory drugs and an increased risk for Alzheimer's, and there's no evidence of a connection between estrogens or NSAIDS and cognitive decline.

There is also not a consistent association involving cholesterol-lowering medicine, obesity, high blood pressure or blood homocysteine levels for either Alzheimer's or cognitive decline.



state-of-the-science conference statement

Factors that may decrease risk

Three factors are associated with a decreased risk for Alzheimer's disease and cognitive decline. These are not necessarily causes, but meaningful connections. They are:
* cognitive engagement, through literacy and social enrichment,
* physical activity later in life, and
* a diet low in saturated fat and high in vegetable intake.

In addition, light to moderate alcohol intake seems to be associated with reducing the Alzheimer's risk, but not for reducing the risk of cognitive decline.

There is not a consistent association involving the use of gingko biloba, beta-carotene, flavonoids, multivitamins or vitamins B12, C or E.


Read my previous post about what reduces risk (or doesn't)

Download the 21-page "Preventing Alzheimer's Disease and Cognitive Decline"
state-of-the-science conference statement

Saturday, May 29, 2010

Can poor vision predict dementia? Untreated, it's associated with cognitive decline

Poor vision that goes untreated is associated with cognitive decline, particularly Alzheimer's disease. Researchers from the University of Michigan, using Medicare data for 625 seniors, found those with vision problems who did not visit an ophthalmologist had a 9.5-fold increased risk of Alzheimer's disease.

”Our results indicate that it is important for elderly individuals with visual problems to seek medical attention so that the causes of the problems can be identified and treated,” says Mary Rogers, PhD. The types of vision treatment that were helpful in lowering the risk of dementia were surgery to correct cataracts and treatments for glaucoma, retinal disorders and other eye-related problems, she says. Rogers is a research assistant professor of internal medicine.

A theory about the association: visual disorders can interfere not only with normal mobility but other activities that may reduce the risk of Alzheimer's disease. These include reading, playing board games, other mentally stimulating activities and social networking.

Thursday, May 27, 2010

'I'm Still Here' tells us Alzheimer's does not mean life ends

It's the disease we dread the most, isn't it? We fear how Alzheimer's wreaks minds, steals memories and personalities. We don't want to be condemned to wandering in a fog. We translate a diagnosis to mean "the end."

But in fact, many people live 10 or 15 years with the disease. A diagnosis is just the beginning, and author John Zeisel argues that Alzheimer's is not the end of the world. His book, "I'm Still Here" (Penguin, $24.95) explains how to connect with someone who has dementia. Music, art, facial expressions and touch are abilities that don't diminish with time and can be the foundation for connection.

More than 5 million Americans are living with Alzheimer's (which represents from 60 to 80 percent of all dementias), and those numbers are set to explode as the Baby Boomers begin celebrating their 65th birthdays next year. So, the practical advice Zeisel offers is assisting a growing number of caregivers.

Though it makes perfect sense, how many of us think to introduce ourselves when greeting a loved one with Alzheimer's? This is done by sitting down next to the person, holding their hand, looking in their eye and saying, 'Hi, Mom, I'm your daughter Miriam, and I love talking to you about Oakland, where you were born.' This is in place of the "test" question, 'do you know who I am?' which may frustrate those we care about and will most certainly crush our spirits when we are reminded that, no, they don't.

Zeisel, who has a background in sociology and architecture, explains in his book how to build memory cues into living environments. He gives advice on preparing for visits with someone who has lost the knack for conversation. And, he reminds us of the importance of telling people with Alzheimer's that we love them.

Tuesday, May 25, 2010

Science increasingly links exercise with cognition

I have an appreciation for running. When I'm injured or otherwise unable to run, I feel it--and not just physically. When I run, my mind recharges. It solves problems. It helps me think clearly.

Lenny Bernstein feels similarly. He is the author of an article about how a growing body of evidence links exercise with mental acuity. As a runner, he experiences that cognitive boost, and he writes in The Washington Post : "The tantalizing question for those of us in middle age and beyond (I am 52) is whether this short-term cognitive benefit can be replicated over the long haul. Can exercise help keep our minds sharp? And if so, can it help delay or prevent the truly terrifying mental deterioration of dementia, most commonly seen as Alzheimer's disease?

"Researchers studying both animals and humans increasingly say the answer is yes."

OK, we're not entirely there yet. The link has been observed.

Dr. John Ratey's book, "Spark, the Revolutionary New Science of Exercise and the Brain," ($24.99, Little, Brown and Company) gives lots of examples. It says aerobic exercise has been shown to be as effective as antidepressants; that women who exercise, lower their chances of developing dementia by 50 percent; that a revolutionary fitness program helped put one U.S. school district of 19,000 kids first in the world in science; and that exercise has been shown to spark new brain-cell growth.

"The evidence is incontrovertible: aerobic exercise physically transforms our brains for peak performance," Ratey's promotional materials say. "The major implication is that exercise not only keeps the brain from rotting, but it also reverses the cell deterioration associated with aging," the doctor told the newspaper.

Monday, May 24, 2010

Clinical trials: Should you participate?

Alzheimer's disease and related dementias are still pretty much mysteries. We do not know what causes them. We do not know how to treat or prevent them. The drugs we have treat some symptoms, but not long-term.

Twenty years ago, long before dementia took over his life, my Dad told me about an extraordinary research project that began in 1986. Catholic nuns at Notre Dame had agreed to be studied and tested by researchers from the University of Kentucky. Upon death, all 678 of the sisters agreed that their brains would be analyzed and stored in a laboratory. All of this was in an effort to provide some Alzheimer's answers.

Lots of other studies are underway, that are not so involved. One that I'm aware of looks at whether Gammagard, a drug already used for immune disorders, can preserve thinking abilities in people with mild to moderate Alzheimer's. I found 18 studies having to do with frontotemporal dementia that are currently recruiting people through the U.S. Institutes of Health's clinicaltrials.gov website--which you can search for studies on other types of dementia.

If you or a loved one qualifies for a clinical trial, should you participate? It's something to discuss with your healthcare provider. The National Cancer Institute gives some guidelines, most of which could apply to any trial for any disease. Some things to ask:

How long will the trial last?

Where is the trial being conducted?

What treatments will be used, and how?

What is the main purpose of the trial?

How will patient safety be monitored?

Are there any risks involved?

What are the possible benefits?

What are the alternative treatments, besides the one being tested in the trial?

Who is sponsoring the trial?

Do I have to pay for any part of the trial?

Will I be compensated?

What happens if I am harmed by the trial?

Can I opt to remain on this treatment, even after termination of the trial?

Many people who choose to participate do so for altruistic reasons. Though they may reap some benefit, the real good comes from the incremental contributions they may make toward solving the mysteries of the brain.

Understanding dementia, from the Cleveland Clinic

Understanding dementia









Sunday, May 23, 2010

Nine tips on caring for your aging parents

Lots of Baby Boomers transition into caring for aging parents. First you're doing their shopping. Then taking them to medical appointments. Soon, making sure bills get paid on time.

Personal finance expert Eric Tyson says "the best way to deal with this important life transition is to plan ahead for the impact the change will have on your parents, while not allowing these changes to take away from your own quality of life."

Easier said than done, right?

Tyson's new book, written with Bob Carlson, includes suggestions about how to help--without turning efforts into a depressing, full-time endeavor. They include:

1. Leverage other's experiences. Find others who have dealt with similar issues, through outreach coordinators or social workers at local senior centers. You may even discover support groups that are helpful. Also, speak with people you already know. You may be surprised how many friends and family members have been down the same road.

2. Ask for professional help. Tap social service agencies, which exist at all levels of government and are rarely advertised.

3. Invest in their health. Be proactive rather than having to react after a problem becomes evident. Focus on a concern that their health be the best it can be.

4. Get your parents' affairs in order. Contemplating one's mortality usually isn't enjoyable, but it's important to have a completed will and estate plan. "Although you may not have the slightest selfish interest in inheriting some of their money and assets, other family members may have a different take on your intentions," Tyson explains. "Be sensitive to their feelings and privacy regarding their finances and what happens with their estate upon passing."

5. Examine housing and medical care options. Be careful not to leap to conclusions about what is best for the situation.

6. Use caregiver agreements. In many families, younger members help care for older members for at least a brief period. Families should pay attention to the details and rules regarding this care partly to ensure they receive maximum benefits and partly so each member will feel he or she is treated fairly.

7. Separate living spaces if parents are moving in. Many families find that this will help set boundaries and cause less interruption of family time by the care needs of an elderly relative.

8. Take care of your family. It's easy to feel overwhelmed, between work and other commitments and caring for an elderly parent. But don't forget your immediate family, your spouse and children.

9. Take care of yourself. The best givers often tend to really neglect their own needs and their own health.

Saturday, May 22, 2010

Another reason to maintain healthy weight: science connects belly fat and dementia


Being overweight or obese in your 30s puts you at greater risk for developing Alzheimer's later in life, says preliminary research from Boston University's School of Medicine. A study involving 730 subjects showed those with pot bellies in their 30s were more likely to have smaller brains by their 50s--which is associated with a greater risk for dementia.

"Our data suggests a stronger connection between central obesity, particularly the visceral fat component of abdominal obesity, and risk of dementia and Alzheimer’s disease,” Dr. Sudha Seshadri, an associate professor of neurology, told The Money Times. "While preliminary, (our data) provide greater understanding of the mechanisms underlying the link between obesity and dementia."

She told WebMD that the deep fat is the culprit. "We found that subcutaneous was not [significantly] associated with any adverse effect on the brain volume, whereas visceral fat was clearly associated with smaller brain volume." The link was also strong between those with a higher body mass index, and between those with a higher waist circumference.

Friday, May 21, 2010

18 months later: physically healthy -- but my how that neuropsychological test was accurate

My Dad amiably answered the doctor's questions, even though the answers he provided were wrong. When asked to extend his arms, or draw shapes on paper, my Dad complied.

On the sidelines of the exam room in this geriatric psychiatrist's office in October 2008 at a medical center in downtown Dallas, I watched my Dad fail what I have since learned was a neuropsychological test. My Mom sat on my right. My then 10-year-old son sat on my left, and we all watched quietly. We encouraged husband/Dad/Grandpa with reassuring smiles and nods. But we all recognized he was not doing well.

My son stayed with his Grandpa in a waiting room while the doctor gave his assessment. It was most clearly frontotemporal dementia. He explained what that is. He mentioned some signs of Parkinson's disease, too. He told us Dad would likely live from 18 months to 3 years.

Which kind of knocked the wind out of us.

Physically, my Dad is so healthy. He was then, and he remains so now, 18 months later.

It would be easy--indeed, it was tempting--to dismiss the psychiatrist and the oddball "test" my Dad had "failed." But the doctor spoke with confidence about signs and symptoms we had not recognized previously. We still think back on things Dad said or did and wonder...was that the beginning of his decline? should that have signaled us that something was wrong with his brain? That gaze in his eyes? The appointments he showed up for a day early? The trouble he had hearing--or was it his comprehension that was off?

I asked the psychiatrist what would kill my Dad. He has this fatal disease, for which there is no treatment, but I wondered what would finally take my father down. Would his heart just stop? Would he just lapse into a coma?

The doctor explained that many people with FTD die after falls, or by choking on food, or by an out-of-control infection. They become incontinent. They forget how to swallow. It was both disconcerting and comforting to hear from a professional what lay ahead. My own subsequent research backed up every word.

So here we are, 18 months later. Dad very distinctly has that Parkison's gait. On most days, he is unaware of his loved ones, and I doubt that any pictures or memory cards I have sent him make any sense to him anymore--or that he can find them. I bet he still has his sweet tooth, but maybe not, (since some dementias steal taste, too.)

He used to fight the caregivers who tried to undress him for showers; now several of the female residents are on his arm. When we visited him once at Silverado where he lives now, Dad emphatically pointed out baboons in the trees outside his window. Since he managed a wildlife amusement park for several years, this "delusion" made sense. Sometimes I wonder if he still sees them. Or if FTD has replaced those delusions with others. He's also incontinent, a progression that adds $500 to the monthly bill.

And even though all of this was predicted by the doctor, even though we watched "Away From Her" and read Lisa Genova's "Still Alice," even though we prepared ourselves in the best ways possible.... sometimes I want to go back in time to that exam room and hear the doctor blame my Dad's confusion on his hearing, or a brain tumor. Something that could be fixed. Or if not fixed, treated. Or if not treated, immediately fatal. Anything but this lengthy deterioration that seems to be playing out just as the doctor predicted.

Wednesday, May 19, 2010

Cost of Alzheimer's: $20.4 trillion over 40 years

Cumulative costs of care for people with Alzheimer's disease from 2010 to 2050 will exceed $20 trillion, says a report from the Alzheimer’s Association. It also says that the number of Americans age 65 and older who have this type of dementia will increase from 5.1 million today to 13.5 million by mid-century.

“We know that Alzheimer’s disease is not just ‘a little memory loss. It is a national crisis that grows worse by the day,” says Harry Johns, President and CEO of the Alzheimer’s Association. “Alzheimer’s not only poses a significant threat to millions of families, but also drives tremendous costs for government programs like Medicare and Medicaid.” He refers to the disease as an "unfolding natural disaster" to which the government's response has been "stunningly neglectful."

The report, "Changing the Trajectory of Alzheimer’s Disease: A National Imperative," indicates that without disease-modifying treatments, total costs (not adjusted for inflation) of care for people with Alzheimer’s disease will climb from $172 billion in 2010 to more than $1 trillion in 2050. The cumulative yearly cost will reach $20.4 trillion.

Annual Medicare costs are expected to rise more than 600 percent--from $88 billion per year today to $627 billion in 2050. And, annual Medicaid costs will rise more than 400 percent--from $34 billion to $178 billion in the same time period.

A disease-modifying treatment that has the ability to delay the onset of Alzheimer's, or a treatment that slows the disease progression, could significantly improve the financial outlook.

“Today, there are no treatments that can prevent, delay, slow or stop the progression of Alzheimer’s disease,” Johns says. “While the ultimate goal is a treatment that can completely prevent or cure Alzheimer’s, we can now see that even modest improvements can have a huge impact.”

Deciphering the role of plaques and tangles -- on the Huffington Post

Dr. Scott Mendelson, author of the book, "Beyond Alzheimer's: How to Avoid the Modern Epidemic of Dementia," is a psychiatrist in Roseburg, Ore. who writes for the Huffington Post.


I asked him about the debate among scientists about whether the "plaques" and "tangles" that are hallmarks of Alzheimer's are actually caused by the disease or byproducts of the neurodegeneration that takes place. And here is his reply:


"You ask a very interesting question. What appears to be the case is that the 'plaques and tangles' are both the cause and byproducts of the disease.

There is a big circle of damaging processes in the illness. Thus, for example, accumulation of amyloid plaque can cause inflammation and poor blood supply that can cause oxidative damage and other lesions. In turn, inflammation and oxidative stress can increase deposition of amyloid. Thus, the illness can begin with inflammation and oxidative damage, or with a genetic predisposition to amyloid deposition. There are many such 'circles' of damage in the illness than can be generated by different problems. I hope this oversimplified answer is helpful."


Tuesday, May 18, 2010

Good news brewing: Caffeine in coffee seems to reduce amyloid-beta production in Alzheimer's

The caffeine in coffee may have the ability to slow Alzheimer's disease and other dementias, according to Portugese reseachers writing in The Journal of Alzheimer's Disease.

They told ScienceDaily that epidemiological studies showed an inverse relationship between chronic caffeine consumption and the motor deficits and neurodegeneration in Parkinson's disease. Later, similar studies showed a similar relationship between caffeine and Alzheimer's disease. The same has been demonstrated in animal models.
It's early, but researchers--Alexandre de Mendonça of the University of Lisbon and Rodrigo A. Cunha of the University of Coimbra--believe caffeine may prevent brain degeneration, play a role in improving thinking and memory, and protect against Alzheimer's.









Monday, May 17, 2010

A dilemma for caregivers: How to occupy the time

My father's move to a memory care facility was much harder on us than it was on him. When he came to Silverado, he believed he ran the place. They placed him in an "office" to stuff envelopes, had him "lead" tours, allowed him to greet visitors and collect the mail from the mailbox at the street.

I fretted about how he would spend his days, and what I could do to help add some purpose.

A friend told me what helped her mom: a box (or cannister) full of memories written on paper. So I cut card stock into rectangles and typed memory after memory, a sentence or two each, and invited friends and relatives to do the same. Slowly we filled a plastic box the size of a shoe box with which--for a while--my Dad would not part. Of course they were all good memories. That was important. But to him, each time he read them, he relived those good times.

My Dad loved reading, but I knew he was no longer able to devour the Thomas Jefferson biographies he used to love. I struggled to find short stories that would hold his interest. I resorted to big coffee table books with photos he might like, and the "I Spy" series of children's books, (hoping he would not realize they were children's books.)

I'd send him letters and/or packages every other day, since I knew he would be getting the mail. But beyond that, from my distance, I was at a loss. Cynthia Green wrote recently in The New York Times' "The New Old Age" column about some ideas, and collected several from readers. Here are 10 of my favorite:

* Adapt a lifelong hobby--for instance, someone who loved cooking could help mash apples for applesauce; a gardener may work with planting small pots.

* Capitalize on interests--a golfer may enjoy watching videos of the game; a gardener may enjoy coffee table books featuring flowers, or even leafing through garden catalogs.

* Scrabble! Verbal skills may diminish, but this game is worth a try.

* Sort through a collection of buttons. They may tell stories about the clothing buttons came from, or comment on each button's characteristics.

* Jigsaw puzzles, the ones that are not too complicated. (You can have them made from a favorite photograph.)

* Sing the first line of a familiar song. They may sing the one that comes after.

* Create a photo book and/or photo DVD that they can look at and share with other residents whenever they want.

* Rhyming games. Have them come up with words that rhyme with a word you choose.

* Watch the cars go by, and start conversations based on what goes past.

* Painting. Potentially messy, but good way to stimulate creativity.

Saturday, May 15, 2010

Some dementias rob taste sensation, too

We know that dementia robs our loved ones of memories and verbalization. Semantic dementia, which affects the temporal lobes, can also take away their ability to discern flavors, according to new research in the journal, Cortex.

Researchers from Washington University and City University London used flavored jelly beans in their study, which The Independent said "shows that the brain plays an integral role in unusual eating preferences and highlights how the brain manages and evaluates flavors and tastes."

"It's quite interesting and unexpected that one would find these sensory signals behaving in the same way words or music might behave," study researcher Jason Warren told MCNBC. "Flavor information is one example of a complex environmental signal that people can lose understanding about, it's part of a more general problem," he said.

Wednesday, May 12, 2010

Grief poetry that leaves a nice feeling

The Dead, by Billy Collins

The dead are always looking down on us, they say,
while we are putting on our shoes or making a sandwich,
they are looking down through the glass-bottom boats of heaven
as they row themselves slowly through eternity.

They watch the tops of our heads moving below on earth,
and when we lie down in a field or on a couch,
drugged perhaps by the hum of a warm afternoon,
they think we are looking back at them,

which makes them lift their oars and fall silent
and wait, like parents, for us to close our eyes.
-from Kevin Young's collection, "The Art of Losing, Poems of Grief & Healing."

Forget-Me-Not Days are May 14 and 15


Donate money to the Alzheimer's Association during "Forget-Me-Not Days" and receive seeds to plant in your own garden. The fund-raiser brought in more than $229,000 in 2009.

This will be the eighth consecutive year that Bankers Life and Casualty Company, a national life and health insurer, has undertaken the fundraiser which puts volunteers in distinctive green aprons, handing out seed packets to raise awareness of the disease.

What a great idea.

These beautiful blueish-purple flowers will come back year after year. They're a pretty way to "carpet" an area of your garden. Plant them after the last frost, spacing them 4 to 5 inches apart and covering them with 1/8-inch of garden soil. They like the shade the best, must be kept moist, and in northern climates will require mulching over winter.

These are the flowers of remembrance, and of true love.