Reposted: Who Am I Now That She’s Gone

From one of my best friends, and one of the strongest women I know, Kathy Ritchie www.MyDementedMom.com

There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.

We’re Young, We’re Poor, & We Need a Cure. Our Lives Depend on It

By my friend and fellow young advocate, Kathy Ritchie

As I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.

(No, you don’t and won’t have enough money to grow old).

While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.

Why? They’re rich and they’re going to get sick.

As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.

You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.

That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.

Still not convinced? Just Google, “Alzheimer’s and 2050.”

This is the quiet before the Tsunami.

Here are a few things you should know:

• Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
• HIV/AIDS was once considered a death sentence; today it’s a “manageable disease.” That’s because a lot of money was thrown into the research bucket and antiviral drugs were developed.
• Medicare will NOT pay for nursing home/assisted living care.
• You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,  “one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
• Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
• Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.  (source: 2012 Alzheimer’s Association, Facts & Figures report)
• In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050.  (source: 2012 Alzheimer’s Association, Facts & Figures report)

What can you (reasonably) do?

• Become an advocate. Make your voice heard.
• Get information: Call Banner Alzheimer’s Institute, the Alzheimer’s Associationor the Association for Frontotemporal Degeneration
• Call your Representative and make an appointment to tell your story (remember, politicians are technically supposed to work for you).
• Attend local town halls. 
• Join YAAA! – Young Adults for Alzheimer’s Awareness!
• Walk to End Alzheimer’s
• Write an editorial for your local newspaper.
• Connect with others via social media (Facebook, Twitter), support groups, or your local Alzheimer’s Association.
• Meet new people at the Alzheimer’s Forum in Washington DC.
• Participate in clinical trials.

Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.

Dementia is not an old person’s disease.

www.mydementedmom.com 

Loneliness Bodes Poorly For A Healthy Old Age

They're time-consuming, demanding and require birthday cards, but they may help keep you alive. Friends and family, that is.

Loneliness in older people can predict declines in health and an increased risk of death, according to findings just published online by the Archives of Internal Medicine. People over 60 who felt lonely had a 45 percent higher risk of death than those who weren't lonely, the six-year-long study found. In absolute terms, the risk of death was about 23 percent for the lonely people and 14 percent for those who weren't.


The lonely people in the study were also more prone to have limited mobility and face greater difficulty performing basic tasks like grooming and housekeeping. On that score, about a quarter of lonely people were likely to develop trouble compared to about 13 percent who weren't lonely.

While the connection between well-being and friendships isn't new, the latest findings look specifically at people who self-identified as lonely, regardless of the how extensive their social network was.
"It's about connectivity," lead researcher Carla M. Perissinotto tells Shots. "Someone can have multiple social contacts but still somehow felt that they're not connecting." Many people who said they were lonely, for example, were married or lived with someone else.

Perissinotto, a geriatrician, cited one of her patients, a 93-year-old woman who had difficulty eating. The woman kept losing weight because she lived alone and viewed eating as a social activity. To treat her, Perissinotto looked for ways to help the woman be with peers during mealtimes.

The data, which were collected every two years from 2002 through 2008 as part of the nationally administered Health and Retirement Study, looked at 1,604 cases to assess risk factors. The study only included people living in the community — not those in care facilities or retirement homes.
By asking about patient's feelings, Perissinotto says she hopes physicians can broaden their understanding of potential health risks and think creatively about addressing them. She says the study can't conclusively prove cause and effect, but sheds light on a significant health issue.

"We could be missing a big part of the puzzle if we choose to focus on traditional medical risk factors," Perissinotto says. "By asking these questions, I may be finding one more way of intervening with these patients."

An accompanying editorial notes that some of the predictive factors found in this study and some others published at the same time should get more attention. "Loneliness is a negative feeling that would be worth addressing even if the condition had no health implications," the authors of the editorial note.

Copyright 2012 National Public Radio. To see more, visit http://www.npr.org/.

A New Attack on Alzheimer’s

The Obama administration has announced a bold research program to test whether a drug can prevent the onset of Alzheimer’s disease well before any symptoms appear. It is a long shot, but the payoff could be huge.

The prevailing, but not universally accepted, hypothesis is that amyloid plaques in the brain play a major role in causing Alzheimer’s. Crenezumab attacks the formation of such plaques, apparently by binding to amyloid proteins and clearing them from the brain. If the drug fails to work, the trial will probably demolish the amyloid hypothesis and set researchers scrambling to find other targets to attack.

Currently, there is no cure for Alzheimer’s, which steadily robs patients of their memory, followed by full-blown dementia. There is also no diagnostic test to identify who has it, and no treatment to slow patients’ deterioration for more than a few months. 

 

While work continues on those fronts, the new clinical trial will test whether the drug, Crenezumab, made by Genentech, can prevent the disease in a group of people whose genetic heritage guarantees that they will develop it. If the drug successfully prevents the loss of mental capacities as measured by a sensitive new cognitive test there is hope — but no guarantee — that it could do the same for members of the general public. As Pam Belluck described in The Times last week, the trial will focus on members of an extended family in Colombia who carry a rare genetic mutation that causes them to develop Alzheimer’s early in life. They typically experience cognitive impairment at about age 45 and dementia by 51. The trial will also include a smaller number of individuals in the United States with the same genetic mutation. 

Instead of recruiting thousands of volunteers and following them for an extended period as in a customary prevention trial, the researchers in Colombia will give the drug to only 100 people with the early-onset genetic mutation. They will give placebos to another 100 people with the mutation and to 100 family members who do not carry the deadly gene. 

The study will cost more than $100 million and is being financed mostly by Genentech, buttressed by $16 million from the National Institutes of Health and $15 million raised by the Banner Alzheimer’s Institute in Phoenix, which is leading the study. 

A prevention trial of a different drug that was also intended to slow formation of amyloid plaques actually made patients’ symptoms worse, possibly because it interfered with various other proteins needed by the brain. Researchers believe that Crenezumab will be safer and more effective, but again there are no guarantees. The risk is justified given that without the treatment the recipients will inevitably get Alzheimer’s in the prime of their lives. The truly big payoff will come if the drug succeeds in this group and lays the groundwork for preventing or slowing the progress of Alzheimer’s that appears late in life. The researchers will be gathering data on a variety of biomarkers — glucose activity in the brain, shrinkage of the brain, certain proteins in cerebral spinal fluid, for example — to see which if any are related to preventing amyloid plaques and the loss of mental abilities. 

If the drug prevents the deterioration of particular biomarkers and ultimately sustains mental capacity, then the same markers might be useful in identifying and treating older people likely to develop the disease. And federal regulators might be willing to approve other prevention drugs based on their short-term effects on biomarkers, speeding the conduct of clinical trials. 

More than five million Americans currently have Alzheimer’s. Without an effective preventive, the number will rise steadily as the population ages. 

Published: May 20, 2012  by NY Times, Editorial

New Drug Trial Seeks to Stop Alzheimer’s Before It Starts

Brain scans of a member of a Colombian family who has Alzheimer's

In a clinical trial that could lead to treatments that prevent Alzheimer’s, people who are genetically guaranteed to develop the disease — but who do not yet have any symptoms — will for the first time be given a drug intended to stop it, federal officials announced Tuesday.

Experts say the study will be one of the few ever conducted to test prevention treatments for any genetically predestined disease. For Alzheimer’s, the trial is unprecedented, “the first to focus on people who are cognitively normal but at very high risk for Alzheimer’s disease,” said Dr. Francis S. Collins, director of the National Institutes of Health. 

Most participants will come from the world’s largest family to experience Alzheimer’s, an extended clan of 5,000 people who live in Medellín, Colombia, and remote mountain villages outside that city. Family members with a specific genetic mutation begin showing cognitive impairment around age 45, and full dementia around age 51, debilitated in their prime working years as their memories fade and the disease quickly assaults their ability to move, eat, speak and communicate. 

Three hundred family members will participate in the initial trial. Those with the mutation will be years away from symptoms, some as young as 30. 

“Because of this study, we do not feel as alone,” said Gladys Betancur, 39, a family member. Her mother died of Alzheimer’s, three of her siblings already have symptoms, and she had a hysterectomy because of her fears that she has the mutation and would pass it on to her children. “Sometimes we think that life is ending, but now we feel that people are trying to help us.” 

The $100 million study will last five years, but sophisticated tests may indicate in two years whether the drug helps delay memory decline or brain changes, said Dr. Eric M. Reiman, executive director of the Banner Alzheimer’s Institute in Phoenix and a study leader. 

Alzheimer’s experts not involved in the study said that though only a small percentage of people with Alzheimer’s have the genetic early-onset form that affects the Colombian family, the trial was expected to yield information that could apply to millions of people worldwide who will develop more conventional Alzheimer’s. 

“It offers a tremendous opportunity for us to answer a large number of questions, while at the same time offering these people some significant clinical help that otherwise they never would have had,” said Dr. Steven T. DeKosky, an Alzheimer’s researcher who is vice president and dean of the University of Virginia School of Medicine. Dr. DeKosky was part of a large group consulted early on, but is not involved in the study. 

Some 5.4 million Americans have Alzheimer’s, and the numbers are expected to swell as the baby boom generation ages. Dr. Reiman’s team is planning a similar trial for people in the United States considered at increased risk for conventional late-onset Alzheimer’s. The study announced Tuesday will include a small number of Americans with gene mutations guaranteed to cause early-onset Alzheimer’s. 

The drug trial is part of the federal government’s first national plan to address Alzheimer’s, which was unveiled Tuesday by Kathleen Sebelius, the secretary for health and human services. The government took the unusual step of assigning $50 million from the current year’s N.I.H. budget to research considered too promising to wait, including the Colombia trial and a study on whether inhaled insulin can ease mild cognitive impairment, Dr. Collins said. Another $100 million is proposed for 2013, mostly for research, but also for education, caregiver support and data collection. 

Success for the Colombia trial is, of course, no sure thing. Many trials fail, and Alzheimer’s research has so far found no treatment effective for more than several months. But experts say that trying drugs years before symptoms emerge could have greater potential because the brain would not yet be ravaged by the disease. The trial will be financed with $16 million from the National Institutes of Health, $15 million from private donors through the Banner Institute and about $65 million from Genentech, the drug’s American manufacturer. 

The drug, Crenezumab, attacks amyloid plaques in the brain. If it can forestall memory or cognitive problems, scientists will know that prevention or delay is possible and appears to lie in targeting amyloid years before dementia develops. Many, but not all, Alzheimer’s researchers believe amyloid is an underlying cause of Alzheimer’s. 

In 2010, The New York Times reported on the pervasiveness of dementia in this large Colombian family and scientists’ hopes of testing prevention drugs. But persuading pharmaceutical companies to invest took months. There are scientific and ethical issues involved with giving drugs to people who are healthy and people who live in a developing country, some of whom have little education, paltry incomes and longstanding superstitions about the disease they call La Bobera — the foolishness.

“The first thing I did was to ask myself the question, Are we taking advantage of these folks?” said Richard H. Scheller, Genentech’s executive vice president of research and early development. “The answer was clearly no.” 

The risks, he said, are balanced by the fact that if nothing is done, “they’re going to get this terrible, terrible disease for sure.” 

The few trials of prevention therapies — involving ginkgo biloba, women’s hormone replacement treatment and anti-inflammatory drugs — have involved people not guaranteed to get the disease. These therapies either failed or caused adverse side effects. 

Testing drugs on that kind of population takes “too many healthy volunteers, too much money, and too many years,” Dr. Reiman said. 

The Colombian population is ideal because it is large enough to provide solid results, and it is easy to identify whom the disease will strike and when. 

Crenezumab was chosen for the Colombia trial partly because it appears to have no negative side effects, unlike other drugs designed to clear amyloid from the brain, said Dr. Francisco Lopera, a Colombian neurologist who has worked with the family for decades and is a leader of the study. Other anti-amyloid treatments have caused edema in the blood vessels, an imbalance of fluid that can have serious consequences. 

Crenezumab is currently being given in two clinical trials to people with mild to moderate symptoms of dementia in the United States, Canada and Western Europe to see if it can help reduce cognitive decline or amyloid accumulation, according to Genentech. 

In the Colombia study, expected to start early next year, 100 family members with the mutation will receive the drug every two weeks in an injection at a hospital. Another 100 carriers will receive a placebo. And because many people do not want to know if they have the mutation, researchers will include 100 noncarriers in the study; they will receive a placebo. 

Researchers have developed a sophisticated battery of five memory and cognitive tests that have been shown in other studies to detect subtle alterations in recall and thinking ability that usually go unnoticed. Dr. Pierre N. Tariot, director of the Banner Institute and a leader of the study, said the measurements would involve recalling words, naming objects, nonverbal reasoning, remembering time and place, and drawing tests involving copying complex figures. 

Dr. Tariot said researchers would also assess changes in people’s emotional state, “irritability, sadness, crying, anxiety, impulsivity — these are cardinal features of the disease as it emerges.”

The scientists will take physiological measurements, including PET scans that measure amyloid and how glucose is metabolized in the brain, M.R.I. scans that measure whether the brain is shrinking, and cerebral spinal fluid tests that measure amyloid and tau, a protein in dying brain cells. 

If any of these indicators are improved by the drug, Dr. Reiman said, scientists may then be able to treat one of these early physiological changes, just as high blood pressure and cholesterol are treated to prevent heart disease. 

In Medellín, Marcela Agudelo, 17, has Alzheimer’s on both sides of her family because her parents are distant cousins. Marcela watched her maternal grandmother die, and her father, 55, once a vibrant livestock trader, has deteriorated so much that he can no longer walk, talk or laugh. 

With the research, “we have more hope for a cure,” Marcela said, “or at least a better life.” 

By PAM BELLUCK, NY Times, Published: May 15, 2012

Dabrali Jimenez contributed reporting.

Early Burdens: Eldercare Falls on Young Shoulders

Suzette Armijo, 30, of Phoenix, right, oversees care of her 86-year-old grandmother, Elizabeth Armijo, left, a retired National Park Service ranger. (Courtesy Suzette Armijo)

By JANE E. ALLEN (@JaneEAllenABC) , ABC News Medical Unit

May 4, 2012

At 30, Suzette Armijo cares for her widowed 86-year-old grandmother, a retired National Park Service ranger in the final stages of Alzheimer's disease, while holding down a fulltime job, a part-time job and raising a 4-year-old son.

"This was nothing that I had planned for," says Armijo, who moved her grandmother Elizabeth Armijo into a nearby six-bed assisted living home because veterans' benefits "wouldn't pay for her to live with me." Still, she says, "I have to do everything for her, aside from her bathing. There's always something new going on with her medically."

Besides her fulltime marketing job with a Phoenix retirement community, Armijo supplements her income with outside consulting because "I do have to pay a portion of Grandma's bills."

 

Although she doesn't know anyone else her age doing what she's doing, she comes to her caregiving out of love for a woman who took care of so many others: "I don't feel torn because I know this is the way my Grandma was," Armijo said Thursday. "She took care of her parents. She took care of my grandfather. She took care of my little brother who had cancer when he was little. I grew up seeing that."

Suzette Armijo is among a generation of young adult caregivers, the majority of whom are women, navigating tough turf without a roadmap. Few of their contemporaries shoulder equivalent responsibilities. Members of the so-called sandwich generation, squeezed by parental caregiving and child-rearing, are a good 20 to 30 years older. As they try to tap into resources to help an ailing grandmother, Mom or Dad, these 20-somethings and 30-somethings are often on a lonely road. Armijo said she's drawn some of her strength from establishing a local young advocates group through the Alzheimer's Association. "You have to find something for yourself, otherwise you lose your mind."

Internet sites like AgingCare.com, which connects caregivers of elderly parents with others, may help this younger caregiving cadre find encouragement, empathy and tips on locating services.

"Other caregivers jump in and help," said Richard Nix, AgingCare.com's 49-year-old executive vice president. The National Stroke Association has launched a free, private Careliving Community with "more than 2,000 caregivers right now," said Taryn Fort, a spokeswoman for the Centennial, Colo.-based organization. Support groups for young caregivers have sprouted within some local chapters of the Alzheimer's Association, said Toni Williams, a spokeswoman for its public policy office in Washington, D.C.
Even the best-laid plans among 20-somethings can be thrown off course by a loved one's catastrophic illness and disability. After graduating from Purdue University in Indiana last May, Lauren Erickson spent six weeks in a competitive pre-medical enrichment program in Cincinnati. In September, she moved to Minneapolis to begin work as a hematology-oncology clinic assistant at Children's Hospitals and Clinics of Minnesota while studying for the Medical College Admission Test, which she hoped to take May 12.


Lauren Erickson, 23, left, moved back home to Prescott, Wis., from Minneapolis, to help care for her dad Jim Erickson, 71, right, following his stroke in March.

 

But on St. Patrick's Day, her father Jim Erickson, 71, suffered a massive stroke at home in Prescott, Wis., which left him unable to speak or move his right side. Because Erickson's mother, 61, was still recuperating from a Feb. 2 hip replacement, the couple's only child stepped in.

"I had to move home and help my Mom," Erickson, 23, said. As a result of new demands on her time, including a significant daily commute to Minneapolis, "I haven't opened an MCAT book or anything," Erickson said. She signed up to take the MCAT in July, but said her taking the test then will depend upon how her father is faring.

Even with a "very helpful" boyfriend and some free counseling through work, Erickson keeps wishing she could do more for her mother. "Through this whole process, I couldn't really break down or cry in front of her. I had to be the strong one." Still, she feels more rushed than ever about achieving her many life goals, including med school admission, "so that I can have my Dad present for all those events."
Having her father David Jenkins nearby was the only solution that Tara Leigh Adams, 28, found acceptable after he suffered a major stroke in November 2010. Adams, married and teaching second grade in Greenville, S.C., raced to her hometown of Charlottesville, Va., to help her 65-year-old father, a widower since Adams was a child.


Tara Leigh Adams, 28, right, a wife, expectant mother and second-grade teacher, moved her father David Jenkins, 65, seated, from Virginia.
 
"I think from the start I kind of, in my heart, knew that was just the way. I always knew he had to be near me," said Adams, who is expecting her first child in October. Aides help her father while she's at work, but once she walks back in the front door, she takes over everything, including getting him to the restroom.
Friends just don't understand, she said. "A lot of people my age look and say 'why do you do this? Why not a nursing home?'"

But for Adams, "there's no other option for me that would ever be as good."

Adams, who calls her husband the "rock that I lean on" said there is no substitute for "waking up and telling my Dad how much I love him in the morning."

The Science Behind Frontotemporal Dementia

When Times staff photographer Rob Gauthier and I first visited the Bryant family last April to begin reporting a story, (“Little-known brain disease rips apart lives of victim, loved ones,”), about a rare type of dementia, known as frontotemporal dementia, we realized that we needed to explore the science behind the malady. FTD, as the disease is known, is similar to Alzheimer's but affects the front portions of the brain and leads to behavioral problems such as the Bryants experienced with Stu.
I knew about Phineas Gage, the railroad foreman who in 1848 lost the front portion of his brain in a terrible construction accident and who survived as a radically changed man. I had read the work of Hanna and Antonio Damasio, neuroscientists who almost 20 years ago pioneered our understanding of the biology of emotions, and I was eager to see how frontotemporal dementia was being studied to further this research.
In the course of our reporting, Rob and I took a number of trips to UCLA and the West Los Angeles Veterans Affairs hospital to interview Mario Mendez, the physician and neuroscientists treating Stu. In our conversations, Mendez helped us understand what Oliver Sacks meant when he wrote, “Without the great development of the frontal lobes in the human brain, civilization could never have arisen.”
By studying the effects of frontotemporal dementia – and its slow diminishment of personality – Mendez is able to see more clearly the so-called social brain, a portion of our frontal and temporal lobes that plays a role in allowing us to successfully interact with each other and build relationships. Take away this portion of the cortex and we are no longer able to moderate our emotions.
Moderation – the inhibition of emotional impulses – can take the form of empathy and embarrassment and is critical in helping us negotiate complex social environments. Without either, as Rob and I learned during the time we spent with Stu, humans grow untethered to the world, unable to read feelings or behave in an appropriate manner.

By steering the discussion about morality, normally the providence of ethicists and philosophers, away from the symposium and putting it inside the laboratory where thoughts are considered to be not so much conscious choices, but instead reflexes based on a neurological network, Mendez and other neuroscientists are furthering the inquiry into the nature of right and wrong. In this light, religion, family, even Freud's notions of superego, ego and id matter less than biology.

Mendez argues that specific behaviors – not harming another person, respecting hierarchy and authority, accepting communal goals, recognizing equity and fairness – evolved among humans. Good manners, therefore, have as much to do with what we are born with as they do with how we were raised and what our parents taught us.
“Much of the social behavior that we take for granted and that we often consider to be learned or cultural or developmental is actually behavior that is deeply ingrained in the nervous system and in the frontal lobes,” Mendez says.
Consider that the next time you’re in a crowded restaurant and watching the kaleidoscope of interactions. Never mind the ability to speak and communicate. Never mind the opposable thumbs. The frontal lobes make humans human.
 
By Thomas Curwen
February 15, 2012

Alzheimer's and the Importance of Early Detection

Alzheimer's disease is one of the top 10 diseases Americans die from each year, but it is the only one on that list that is expanding as the other causes of death are declining. Alzheimer's disease is a degenerative brain disease and the most common form of dementia.

"Alzheimer's is becoming a more common cause of death as the populations of the United States and other countries age," notes the Alzheimer's Association. "While other major causes of death continue to experience significant declines, those from Alzheimer's continue to rise."

One reason for this difference is that the other leading fatal illnesses are preventable, such as stroke and heart disease, but Alzheimer's cannot be prevented with lifestyle changes. According to the Alzheimer's Association, preliminary data from between 2000 and 2008 showed that deaths attributed to Alzheimer's increased 66 percent, while those attributed to the No. 1 cause of death, heart disease, decreased by 13 percent.

Such statistics make the latest Alzheimer's research so vital for those who suspect they may get the disease, those already suffering from it and their friends and family, who may provide some level of in-home caregiver support during the long course of the disease.

Some of the biggest news about Alzheimer's currently is the importance of early detection.

"Biological changes associated with Alzheimer's disease are thought to begin 10 to 15 or perhaps 20 years before an individual displays symptoms," states Dr. Heather Snyder, senior associate director of medical and scientific relations at the Alzheimer's Association. "But there is no single generally accepted way to identify the disease in its earliest stages -- before symptoms are evident. At the same time, Alzheimer's therapies are in development that may be able to slow or stop the progression of the disease."

There are efforts underway to update the diagnostic criteria in a variety of ways, including biomarker measures. This spring, the National Institute on Aging (NIA) and the Alzheimer's Association published new diagnostic criteria guidelines for Alzheimer's disease in Alzheimer's and Dementia: The Journal of the Alzheimer's Association.
You might ask: If the disease cannot currently be stopped or cured, what difference does early detection make?
"The benefits of early detection are many," says Beth Kallmyer, senior director of constituent services at the Alzheimer's Association. "People who are diagnosed early can participate in the planning of their future -- they can talk to their families about advanced directives, how they want to have their finances handled, what they want to have happen when they can't drive anymore."

Not only does this allow the person with Alzheimer's disease to feel empowered, Kallmyer says, but it's a huge relief to their caregivers and loved ones who otherewise may have to make decisions under a great deal of stress later, when the disease is in its advanced stages.

We recently posted an article on Homewatch Caregivers that pulls from the Alzheimer's Association's own 10 Signs of Alzheimer's list. There is a distinct difference between the signs of normal aging and early Alzheimer's disease. For example, someone may answer the phone and simultaneously put down their keys, then not be able to find them a few minutes later. A normal aging brain will retrace their steps and remember the moment that they answered the phone, whereas an individual with Alzheimer's disease will not remember the phone call or be able to retrace their steps.

Kallmyer points out that the role of an in-home caregiver to someone with Alzheimer's is unique in the length of the disease and increased need. "It starts with helping with memory aides and then ends when the person with Alzheimer's can do nothing for themselves," she says.

Another benefit to early detection of Alzheimer's disease is that the individual can decide if they want to be part of future Alzheimer's research by signing up to participate in clinical trials. "When somebody has a fatal illness, clinical trials can be a great way for them to feel like they are making a change," Kallmyer says. "They might feel like they are making a difference for their kids and grandkids."

Ultimately, with hopes that there will be treatments for Alzheimer's disease, the time to intervene will be in the earliest stages of the brain disease. "This approach envisions what is now common practice in heart disease," says Dr. Snyder. "Where early signs of risk -- for example, in genetic markers or in blood cholesterol and/or blood pressure levels -- can be treated to reduce the chances of heart attack or stroke later on."

Dr. Snyder said there is a lot more research to be done on Alzheimer's disease. "There are many unanswered questions in Alzheimer's disease," she says. "We do not yet know the causes of the disease, we do not know risk factors associated with Alzheimer's disease."

By Leann Reynolds

When Lapses Are Not Just Signs of Aging

Who hasn’t struggled occasionally to come up with a desired word or the name of someone near and dear? I was still in my 40s when one day the first name of my stepmother of 30-odd years suddenly escaped me. I had to introduce her to a friend as “Mrs. Brody.”

But for millions of Americans with a neurological condition called mild cognitive impairment, lapses in word-finding and name recall are often common, along with other challenges like remembering appointments, difficulty paying bills or losing one’s train of thought in the middle of a conversation.

Though not as severe as full-blown Alzheimer’s disease or other forms of dementia, mild cognitive impairment is often a portent of these mind-robbing disorders. Dr. Barry Reisberg, professor of psychiatry at New York University School of Medicine, who in 1982 described the seven stages of Alzheimer’s disease, calls the milder disorder Stage 3, a condition of subtle deficits in cognitive function that nonetheless allow most people to live independently and participate in normal activities.

One of Dr. Reisberg’s patients is a typical example. In the two and a half years since her diagnosis of mild cognitive impairment at age 78, the woman learned to use the subway, piloted an airplane for the first time (with an instructor) and continued to enjoy vacations and family visits. But she also paid some of the same bills twice and spends hours shuffling papers.

Dr. Ronald C. Petersen, a neurologist at the Mayo Clinic College of Medicine in Rochester, Minn., described mild cognitive impairment as “an intermediate state of cognitive function,” somewhere between the changes seen normally as people age and the severe deficits associated with dementia.

While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.

Dr. Petersen described two “subtypes” of the condition, amnestic and nonamnestic, that have different trajectories. The more common amnestic type is associated with significant memory problems, and within 5 to 10 years usually — but not always — progresses to full-blown Alzheimer’s disease, he said in an interview.
“Subtle forgetfulness, such as misplacing objects and having difficulty recalling words, can plague persons as they age and probably represents normal aging,” he wrote. “The memory loss that occurs in persons with amnestic mild cognitive impairment is more prominent. Typically, they start to forget important information that they previously would have remembered easily, such as appointments, telephone conversations or recent events that would normally interest them,” like the outcome of a ballgame would a sports fan.
The forgetfulness is often obvious to those who are affected and to people close to them, but not to casual observers.

The less common nonamnestic type, which is associated with difficulty making decisions, finding the right words, multitasking, visual-spatial tasks and navigating, can be a forerunner of other kinds of dementia, Dr. Petersen said.

In general, Dr. Reisberg said, “mild cognitive impairment lasts about seven years before it begins to interfere with the activities of daily life.”

The Correct Diagnosis

Distinguishing mild cognitive impairment from the effects of normal aging can be challenging. Typically, new patients take a short test of mental status, provide a thorough medical history and are checked for conditions that may be reversible causes of impaired cognition. Problems like depression, medication side effects, vitamin B12 deficiency or an underactive thyroid can mimic the symptoms of mild cognitive impairment.
Other tests, like an M.R.I. or CT scan of the brain, can look for evidence of a stroke, brain tumor or leaky blood vessel that may be impairing brain function.
It is natural, Dr. Petersen said, for patients and their families to want to know whether and how quickly the disorder might progress. While patients decline by about 10 percent each year, on average, certain factors are associated with more rapid progression. Among these are the presence of a gene called APOE e4, more common among patients with Alzheimer’s disease; a reduced hippocampus, a region of the brain important to memory; and a low metabolic rate in the temporal and parietal regions of the brain.
Amyloid plaques in the brain, while a hallmark of Alzheimer’s disease and a predictor of progression, have also been found at autopsy in people with perfectly normal cognitive function.

Preserving Cognitive Function

Despite a number of clinical trials that tested various medications, no drug to treat mild cognitive impairment has been approved by the Food and Drug Administration. But experts like Dr. Reisberg and Dr. Petersen suggest several approaches that may slow the decline in cognitive function.
Although studies did not show that medications like donepezil (brand name Aricept) and memantine (Namenda), both used to treat Alzheimer’s disease, change the ultimate course of mild cognitive impairment, Dr. Reisberg said they can be useful temporary treatments that may stabilize patients for a few years.
Although the drugs are not approved for this condition, licensed physicians can prescribe approved medications “off label.” “Clinicians have to work with what we have,” Dr. Reisberg said.
There are people who think they are having memory problems, but tests do not show anything definitive. Some may be in Stage 1 of Alzheimer’s disease, Dr. Reisberg said, and perhaps could benefit from early treatment with the drugs.

It is also important to reduce cardiovascular risk factors like smoking, elevated cholesterol and high blood pressure; keep blood sugar at normal levels; minimize stress (which in animal studies can cause the hippocampus to shrink); and avoid anticholinergic drugs that can interfere with brain chemicals important to memory. These include Demerol to treat pain, Detrol to treat a leaky bladder, tricyclic antidepressants, Valium, and over-the-counter medications with Benadryl (diphenhydramine), like Tylenol PM, Dr. Petersen said.

Some cognitive rehabilitation exercises, like computer games that enhance focus, may be helpful, Dr. Petersen said, but there have been few good studies to demonstrate a benefit. Compensatory techniques, like taking notes, creating mnemonics and making structured schedules, can be useful aids, he added.
But most promising is regular physical exercise, which in animal studies was found to reduce the accumulation of amyloid in the brain. An Australian study in patients with memory problems showed that brisk walking for 150 minutes a week improved cognitive function.

By JANE E. BRODY

New York Times

YAAA! Young Advocates for the Alzheimer's Association Meeting & Social

PLEASE NOTE THE NEW LOCATION! Our next meeting is August 9th from 6-8pm in Phoenix. Please see below for more details and we will see you there! ~ Suzette

Applebees Neighborhood Grill & Bar

2547 N 44th St (just South of Thomas Rd)

Phoenix, AZ

YAAA!, Young Advocates for the Alzheimer's Association, will be having Monthly meetings every 2nd Tuesday of the month from 6:00-7:00 pm followed by a supportive social from 7:00 - 8:00 pm. Young adults 18-39 are welcome to attend! We will be reviewing current federal and state priorities of the Alzheimer's Association as well as any advocacy done by our YAAA! members for the previous month.

After the meeting we invite everyone to stay for our supportive social from 7:00 to 8:00pm to further bond with members, prospective members or just enjoy drink and food specials for happy hour! Please calendar this for future reference and let me know when you can make it. I am looking forward to seeing everyone!

YAAA! Facebook page: www.facebook.com/DSWYAAA

Live in Phoenix? Then Save the Date, May 10th & Every 2nd Tuesday Evening!

EVENT 1 (12-3 p.m.)

My friends at the Banner Alzheimer's Institute are hosting a 3 hour program for friends and family of loved ones with Frontotemporal Dementia (FTD, sometimes called Pick's disease) to help them better understand and cope with the symptoms, disease progression and the kind of care required. You'll hear from experts in the field of this dementia, get your questions answered and meet others who are in the same boat.
Remember, you may feel like you're an island unto yourself when dealing with this, but you are never alone. You just have to take that step, and this is a great first step.
Space is LIMITED, so register for this workshop STAT. Email Deidra Colvin at Deidra.Colvin@bannerhealth.com

EVENT 2 (6-8 p.m.)
YAAA!, Young Advocates for the Alzheimer's Association, will be hosting its supportive social starting at 6 p.m. at Cheuvront Restaurant & Wine Bar. YAAA! is for younger adult caregivers (18-39) and the intent is to focus on advocacy at the state and federal levels... This is your chance to make your voice heard! Our mix and mingle starts around 7 p.m... this is a great opportunity for caregivers, friends and family to connect, talk to people in the field and find a real support system here in the Valley.

2011 Alzheimer's Association Advocacy Forum

With newly elected leaders in Congress, it is more important than ever that our messages about the Alzheimer epidemic get heard. We need passionate Alzheimer advocates to come to Washington, D.C., to lend their VOICE to the cause.

Join us in our nation's capital May 15-17, 2011, for the Alzheimer's Association Advocacy Forum – become educated about the issues, learn new skills, network with fellow advocates and take our message directly to members of Congress to fight for our legislative agenda.

"I am going back this year! I met amazing, motivated people and had a life changing time. It is such an awe-inspirring time to be in an already beautiful place. To be able to make a difference, speak up... fight... I highly recommend this forum!"

—Advocate Suzette Armijo

2010 proved to be an outstanding year for Alzheimer advocacy. We saw:
•  The historic passage and signing of the National Alzheimer's Project Act (NAPA).
•  The inclusion of younger-onset Alzheimer's disease in the Social Security Administration's compassionate allowance program.

•  The first-ever inclusion of Alzheimer's disease and other dementias in the government's Healthy People 2020 report.

•  Detection of cognitive impairment included as a mandatory part of the new Medicare annual wellness visits
•  More than 112,000 petition signatures collected through the Alzheimer's Breakthrough Ride urging Congress to make Alzheimer's disease a national priority.

Each of these major victories, together with all important wins that have happened around the country on a state and local level, would not have been possible without the commitment and action of you, the Alzheimer advocate.

But even as we celebrate our successes, we still have much work ahead to ensure we build on this momentum to lead our country toward overcoming the Alzheimer crisis. The Alzheimer's Association Advocacy Forum is the premier experience to learn how we can continue to successfully advocate for these issues.

This year's Forum will be held May 15-17, 2011, in Washington, D.C. We have a program that is designed to help you hone your advocacy skills — not just for your visits on Capitol Hill, but also as you return home. You will learn about our legislative priorities, our critical messages and how to deliver these messages to key decision makers. You will learn about how to engage your local legislators and how to use a wide variety of resources in your communities to encourage more people to join with us as Alzheimer advocates.

I look forward to seeing you in May as we celebrate our recent victories and redouble our efforts to secure the Association's mission of a world without Alzheimer's.

Karen Kauffman
Advocacy Forum Chair

National Alzheimer’s Project Act (NAPA) Becomes Law

Landmark legislation passes

The National Alzheimer's Project Act (NAPA) is the largest legislative victory in many years for the Alzheimer cause. Over the last several years, the Alzheimer's Association has been the leading voice in urging Congress and the White House to pass the National Alzheimer's Project Act (NAPA). The National Alzheimer's Project Act will create a coordinated national plan to overcome the Alzheimer crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer research, clinical care, institutional, and home- and community-based programs and their outcomes. Alzheimer's advocates were instrumental in moving NAPA through Congress. More than 50,000 e-mails, nearly 10,000 phone calls and more than 1,000 meetings by the Alzheimer's Association and its advocates led us to the historic legislative victory for the Alzheimer community.

NAPA Chronology

January 4, 2011	President Obama signs NAPA into law, marking the largest legislative victory in many years for the Alzheimer cause.
Late December	Alzheimer's Association advocates have sent more than 15,000 email messages to the White House asking the President to sign the National Alzheimer's Project Act into law.
December 15, 2010	Thousands of advocates flood Capitol Hill with phone calls and e-mails urging their Representatives to vote for NAPA. NAPA is passed by the House of Representatives and moves to the White House for signature.
December 9, 2010	Alzheimer's Association President and CEO Harry Johns testified before the House Committee on Energy and Commerce, Subcommittee on Health. Harry spoke about the importance of NAPA and encouraged its immediate passage.
December 8, 2010	After Alzheimer's Association advocates blanket Senate offices with phone calls and e-mails for several days, asking the Senate to pass NAPA immediately, the National Alzheimer's Project Act (S.3036) passed the Senate unanimously and moved to the House of Representatives.
December 1, 2010	After months of behind the scenes work by the Alzheimer's Association federal affairs team with champions in Congress, the Senate Committee on Health, Education, Labor, and Pensions (HELP) approved the National Alzheimer's Project Act (S. 3036).
October 18, 2010	With the release of The Shriver Report: A Woman's Nation Takes on Alzheimer's Disease, repeated appeals are made for the passage of NAPA in Hill visits, Administration briefings, Washington policy briefings, and by Maria Shriver in interviews on This Week and other news programs.
September 21, 2010	Concluding the Alzheimer's Breakthrough Ride, on World Alzheimer's Day participants cycled to Capitol Hill and presented more than 110,000 petition signatures for delivery to Congress. The petition called for passage of the National Alzheimer's Project Act and two other Alzheimer's Association priorities. Researchers who participated in the Alzheimer's Breakthrough Ride visited Capitol Hill to meet with more than 50 Members of Congress, urging their support for NAPA. Later that day, the Alzheimer's Association delivered a message in support of NAPA at a special White House briefing on Alzheimer's disease. Harry Johns, Alzheimer's Association President and CEO, and National Board Member Stephen Hume, Psy.D., an individual living with the disease, made presentations at the meeting, focusing on the urgent need for a coordinated national Alzheimer's strategy and for its swift implementation. See the full video of the White House meeting.
July 30, 2010	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet again with Pete Rouse, one of President Obama's top aides, to solicit the Administration's support for NAPA and for creating a national strategy to combat Alzheimer's disease.
Summer 2010	The Alzheimer's Association's President and CEO, Harry Johns, and the federal affairs team make the rounds on Capitol Hill, meeting with members of Congress and staff to drum up support for NAPA and to plan strategy on how to enact the bill by the end of the year.
March 9, 2010	Alzheimer's Association Advocacy Forum attendees march on Capitol Hill to meet with their Members of Congress, urging their support for the National Alzheimer's Project Act. David Hyde Pierce joins advocates from Iowa to meet with Sen. Chuck Grassley (R-Iowa).
February 2, 2010	With active collaboration and drafting support from the Alzheimer's Association, the National Alzheimer's Project Act is reintroduced by Senator Evan Bayh and Senator Susan Collins in the Senate (S.3036) and by Rep. Ed Markey and Rep. Chris Smith (H.R.4689) in the House. The Alzheimer's Association immediately endorses the reintroduced bill.
July 31, 2009	Based on the Alzheimer's Study Group recommendations and following consultations with the Alzheimer's Association, Sen. Mel Martinez introduces the first National Alzheimer's Project Act in Congress. The Alzheimer's Association immediately endorses the bill.
July 20, 2009	The Alzheimer's Association President and CEO Harry Johns, former National Board Public Policy Chair Bettylu Saltzman, and Public Policy Vice President Robert Egge meet with Pete Rouse, one of President Obama's top aides, to discuss the Alzheimer's crisis and introduce the need for a bold, coordinated national Alzheimer strategy to address it.
March 25, 2009	Alzheimer's Study Group releases its final report, A National Alzheimer's Strategic Plan: The Report of the Alzheimer's Study Group. The report calls for the creation of a National Alzheimer's Strategy and an Alzheimer's Project Office within the federal government. Harry Johns, President and CEO of the Alzheimer's Association, pledged, "You can be assured that the Alzheimer's Association will play a leading role in seeking the enactment of the core recommendations present in the ASG report." That same day, advocates attending the 2009 Alzheimer's Association Advocacy Forum visited their Members of Congress urging support for these key Alzheimer's Study Group recommendations, the beginning of the Association's ongoing campaign to accomplish this objective in the 111th Congress. Register now to attend the 2011 Alzheimer's Association Advocacy Forum.
July 11, 2007	With endorsement of, and financial and in-kind support from, the Alzheimer's Association, the Alzheimer's Study Group is launched at a Capitol Hill Conference. The Alzheimer's Study Group is also endorsed at the launch event by then Alzheimer's Disease Task Force co-chairs, then-Senator Hillary Clinton and Senator Susan Collins, and Rep. Ed Markey and Rep. Chris Smith, as well as by Senator Barbara Mikulski and Senator Richard Burr.
July 2007	Speaker Newt Gingrich and Robert Egge author an article in Alzheimer's and Dementia: The Journal of the Alzheimer's Association. This article, "Developing a National Alzheimer's Strategy Equal to the Epidemic," first makes the case for the creation of a federal Alzheimer strategy.