Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

Personal Note: This book will make you laugh; it will make you cry. It will make you think and make you feel. The book will give you some real perspective about your life and those you love. I recommend this book.

Editorial Reviews
From Booklist

O’Dell, a member of the “sandwich generation”–made up of boomers taking care of both their own children and their elderly parents–portrays the experience of looking after a mother suffering from Alzheimer’s and Parkinson’s with brutal honesty and refreshing grace. She peppers the memoir with scenes from her past, including meeting her adoptive parents (“The first time I saw Mama, I was four years old”) and the death of her father. With three children and a husband of her own, O’Dell is torn in multiple directions, trying to be mother, daughter, nurse, cook, caregiver, maid, and more to a household of needy people. Mama’s neediness is unrelenting, and O’Dell is at once bitter and sorry that her mother cannot be who she was. When the inevitable end comes, O’Dell wonders why she longed for the free time she now finds lonely and empty. A beautiful rendering of a difficult but all-too-common situation, told with plenty of humor, a touch of martyrdom, and much love. Mary Frances Wilkens

“I loved this book! I not only loved it, I lived it. I laughed, I smiled and shuddered reading this book. O’Dell has captured the essence of every Baby Boomer’s struggle to parent our parents.” — Judy H. Wright, author, Kids, Chores & More

“Those of us in the Baby-boomer generation will resonate with the emotional roller coaster that many of us have or are currently experiencing, or fear having to face with our own aging parents.” —Barry K. Baines, MD, author, Ethical Wills: Putting your Values on Paper

“Carol O’Dell is my new hero. . . . Told in vignettes instead of a linear fashion, O’Dell tells in brutal honesty the horrors and pleasures of exactly what one shoulders when saying, ‘Come live with us; I’ll take care of you.’” —Armchair Interviews, Casa Publishing

Author Reviews

Lynn Hoffman “author: The New Short Course in Wine… (Phila., PA USA)

There are really two stories packed into this marvel of a book:
one is the story of how a family came together. This is the story
that will leave you in awe of the human will to love and to make
groups in which to exercise that will.
The second, longer story is about how that family got smaller with
a mother’s sickness and death. It is told with such tenderness
and good humor that the reader is left elevated-up on a higher
level with a longer view of life and those we care about.Mothering
Mother is funny, moving, ennobling and a real treat to read.

By Cheryl Tardif “aka Cheryl Kaye Tardif, author… (Edmonton, Canada)

Carol O’Dell, author of her debut memoir Mothering Mother, will make you laugh and cry. Her heartfelt chronicle about caring for her dying mother is an emotional tribute to self-sacrifice and a daughter’s unfailing love–an adopted daughter’s love, to be more precise.

Carol’s mother adopted her late in life and raised her in a strict, religious environment. But it perhaps is their faith that kept them all together until the end. Although she has her faults and may seem somewhat cool at times, Mama did the best she could, and I think that is the realization that the author has come to. And certainly, it is what we all should hope to conclude at the end of our parents’ lives.

The author shows us her own strength and her weaknesses, baring her thoughts, her emotions, her decisions and her very soul in a way that takes more courage than many of us would have. A loving daughter with a mother who suffers from Parkinson’s and Alzheimer’s, she takes her mother into her home, working around a husband and kids, and fighting the inevitable. Faced with the deteriorating health of a stubborn mother, Carol is faced with countless tasks in any given day or night, tasks that threaten to destroy her physically, mentally and spiritually. Many of the anecdotes are charming and hilarious, while others are heartbreakingly sad.

I recently bought a copy for my own mother–for Mother’s Day–even though my mom is healthy, still working and independent. And while this may seem a strange gift, I felt that Carol O’Dell’s book shows a glimmer of light at the end of what most people view as a dark tunnel. She shows that sometimes being prepared is half the battle. Perhaps then, many of us would not feel as though too many things were left undone, unsaid…unforgiven.

Mothering Mother is a beautiful story, a true story, of how love can conquer even death. I’ve never laughed and cried at the same time so much. It made me want to call my mom and tell her how much I love her. It made me talk to my daughter and tell her that if she ever had to care for me and felt that I was too much of a burden, that it was okay to look for alternate care.

I’ll be honest; I normally don’t read a lot of memoirs. I often find them hard to relate to. But I LOVED Mothering Mother! It is the type of book that everyone should read. It will stay with you long after you have put it down. And for those caring for aging or dying parents, it will give you hope and remind you that you are not alone–someone else has traveled this path…and she survived. So can you.

Cheryl Kaye Tardif, author of The River, Divine Intervention and Whale Song

Reader Reviews

By J. Frick (Amelia Island, Florida)

I loved this book, it made me laugh and it made me cry! I thought of my own mother and although she didn’t have to linger on for years with a disease, I could relate to what Carol was going through — and her family. Sometimes I think we forget how hard it is on the rest of the family beyond the primary caregiver. I love the style Carol wrote the book, in small sections, trying to capture events quickly. I would recommend this book to everyone!

By Belinda Hulin “Belinda” (Florida)

Anyone who has a mother–and especially those who are mothers–will find something edifying and soul-nurturing in this beautifully-written memoir. The end is sadly inevitable, but the journey there is a rich, full adventure of the heart. This true story shows that the bond between mothers and daughters can be a messy, painful business. But in the end, what shines through is the triumph, and the continuity, of love.

By Andy Tilley

Carol tells her heart breaking story with a frankness and honesty that says as much about her as a person as it does an author. The inevitability of her situation should be crushing but Carol’s wit and candidness manages to lift even the darkest of moments. A must read for anyone who thinks that they might need help facing this, the most personal of challenges, in their future.

The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

I ran across this article while “fishing” on the Internet. This tried-and-true technique can be used when you are at “wits” end when dealing with difficult behavior. The article contains examples that should help you develop your own frame of reference and techniques when dealing with difficult situations on a daily basis. It should be particularly useful in helping you understand that the often bizarre behaviors evidenced by your Alzheimer’s loved one are not uncommon and can be dealt with effectively. This article is worthwhile reading and is worth “salting away” for future reference.

Nursing Homes, June, 2000 by Mark Warner

DESIGNS for Validation Therapy

Mark Warner

This tried-and-true technique can be supported in the Alzheimer’s environment

As each member of the group sat in the circle hoping the balloon would gently drift their way, Roxanne burst from her chair in a fit of rage, shouting “There’ll be no ball-playing in my house!” Furious at the insolence of the players who ignored her commands, Roxanne forcefully attacked a staff member, who tried to comfort her by explaining that she was not in her house, but merely with her friends playing a game. Roxanne didn’t buy that and swung wildly, hitting the staff member squarely in the chest.

Fearing that I, too, might fall victim to the same fate, I cautiously approached Roxanne.

I put my arm around her shoulder and supported her in her cause that there should be no ball-playing in her house. “This is terrible,” I said. “You’re right, they should not be throwing that ball in your house, should they?”

“No, they shouldn’t,” bellowed Roxanne, showing only the slightest relief that someone saw her point of view.

“But you know, Roxanne, the only way they will stop throwing that ball is if we write down the rules for them. I think it’s the only way they’ll listen.” Roxanne was buying this approach, so I suggested, “Let’s go into that room over there and write down all the rules for them, okay?” Much to my relief, Roxanne agreed, and hand-in-hand we went into the room to write down the “rules.”

“Okay,” I began, “Rule Number One is ‘No ball-playing in the house,’ right?”

“That’s right,” agreed Roxanne.

“So what will Rule Number Two be,” I asked, and then offered, “How about, ‘No running in the house’?”

“That’s right,” said Roxanne, “my grandchildren are not allowed to run in my house.”

“Roxanne, you’ve got grandchildren,” I said, raising the tone of my voice with delight.

“Oh, yes, my little gran’boy is six years old, and he is as smart as they come.” Roxanne was on a roll now, and the upset caused earlier by the balloon toss in the next room might as well have been miles away. Fifteen minutes later, when the game was over, Roxanne and I emerged from the room, both of us just as happy as we could be, the “rules” left on the table and the incident long forgotten.

The technique used here is called Validation Therapy. It assumes that no matter what illusion the person with Alzheimer’s disease (AD) is living, she is right, and nothing you can say or do will convince her otherwise. Naomi Feil is the acknowledged expert on validation therapy and wrote the book The Validation Breakthrough. The basic concept is that you have to buy into the resident’s illusion and convincingly play along with it, there by validating it. Eventually you’ll see opportunities to mold the tale–and the resident’s behavior–into something that is acceptable and no longer upsetting.

“What has this got to do with design,” you ask? Everything, in fact. Understanding Alzheimer’s disease and the many creative ways to deal with it are as much a challenge of designing an environment as of caregiving within it.

Angie is always complaining about the stranger in the bathroom. She won’t use the toilet while “the other lady” is in there. She says that the bathroom is occupied, not realizing it is her own reflection that she sees. Do you explain that she is seeing herself in a mirror?

No. You go along with her. How about, “I’m sorry, Angie, let me see what’s taking that lady so long.” You go into the bathroom and somehow cover the mirror. One family confronted by this situation told their mother that the mirror was dirty and needed to be cleaned. They sprayed it with a powdered deodorant, creating a haze that obscured any reflection. “Mom, she’s out of there now,” her daughter said. “I wonder what took her so long. Let me know if you need anything. I’ll be right here waiting for you.”

Caregiver 1: “Deborah won’t eat anything. She just sits at the table and stares at the food. She loves gardening, though; we spend hours every day weeding and pruning the vegetables in our garden.”

A golden opportunity awaits us here. Figure it out. Deborah loves gardening, but won’t eat.

“So we tried something a little different. Though the tomatoes were days from ripening, I went to the grocery store and picked out some beautiful red ones. Instead of putting them on the table in front of her, I pretended to come in from the garden, tomatoes in hand. As Deborah Looked at the tomatoes, I told her, ‘They came from our garden and don’t they Look delicious?”‘

Granted, such ploys are not always so successful, but many are. Sharing the bounty of the garden, enjoying the fruits of your labor that you grew together, can somehow trigger pleasant, guiding thoughts and behaviors when all else fails. Perhaps it stirs up memories from long ago, or maybe it’s just the thrill of eating your own garden vegetables. Regardless, it adds a new dimension to life that might very well conquer the ravages of the disease and perhaps bring new purpose to those waist-high gardens many facilities are installing these days.

Taking validation to the next step often involves anticipating the problem and creating the illusion. Validation, also referred to as deceptive therapy, white lies and fiblets, means creating a story–in the best interest of the person who is “confused.”

“Dad, who’s president? Do you remember his name?”

“Of course l do, it’s Roosevelt!”

If your family member believes it is the 1930s, so be it. As he regresses in time, so do his memories of values, experiences and people. What was important then becomes important now!

Given residents’ belief that they are living when Roosevelt was president, what would the world have been like back then? What would the good experiences and environmental features have been? How can we recreate the familiar feelings of that period in a convincing and subtle way?

For example, those were the days when they hung the clothes on a line in the back yard. Isn’t that the kind of good and secure feeling we would want to recreate–possibly by merely providing a clothesline? Others might be enjoying the time when they were raising their families. What better way to indulge them than by allowing them to once again care for their spouse or children by hanging “their” clothes out to dry?

Or, perhaps they have less comforting memories.

Caregiver 2: “Mom collects everything–rubber bands, paper clips paper…everything! And she stores them everywhere. You can hardly walk in her room, there is so much stuff in there!”

Perhaps Mom is reliving times when the country was at war, when every little scrap was valuable in the war effort, or the Great Depression, when times were so tough that you had to keep everything, when nothing that might be useful was thrown out. Environmental validation then might mean providing easy-to-see drawers, trunks or cabinets to store these important items.

How were evenings spent in the good ol’ days (before TV, let’s say)? Many families spent hours sitting on the porch, watching people go by, talking to neighbors, etc. Why not create a porch, complete with rockers and swing gliders? Locate it carefully and safely, but within view of interesting activities (maybe a playground where children play). Make sure it is secure for those who might try to leave or climb over the railing; it should also be far enough from strangers outside who might be perceived as intruding into their space. Perhaps a screened porch would do the trick.

One should also beware of environmental miscues.

“Bruce, why aren’t you eating?”

“I didn’t bring my wallet and can’t pay for the meal.”

Although Bruce is living in an assisted living facility and doesn’t have to pay for his meal, he doesn’t realize that. As far as he is concerned, this large, beautiful dining room is a restaurant, and the more he eats, the bigger the bill. Perhaps if we had divided the room into smaller, more homelike dining rooms and spared the expense of the huge chandelier, Bruce would feel more comfortable with his home-cooked meal.

Don’t forget that little environmental touches can mean a lot.

Caregiver 3: “My mother refused to take a bath. For years, soaking in a warm tub of water had been the highlight of her day. But now, for some reason, she feared the tub and everything it represented. Eventually she confided in me, relating a childhood story about a little girl who got sucked down the bathtub drain. She recalled that tale and, like that little girl, she was afraid that she too might fall victim to that terrible fate. The solution: We put a mat over the drain. Her fear suddenly disappeared.”

In a daycare center, angry and impatient residents wait for their rides to take them home. Each time the door opens, one, two or even three of them race to it and powerfully attempt to get into the van, which has actually arrived to transport someone else. Staff members intervene, often unsuccessfully, overcome by the strength and determination of people with a very important cause (the van is there for them). If we, as facility planners and designers, can anticipate this kind of behavior, we can plan door placement to eliminate visibility of the van outside, thus avoiding this upsetting and potentially volatile situation. There are design solutions for problems like these, if problems are simply acknowledged and thought about ahead of time.

Although the stories I’ve recounted are all too familiar to healthcare professionals, they are often “Greek” to design professionals. Nevertheless, it is a design credo: To design for any client, you have to understand the client. Why should those who have Alzheimer’s disease be treated any differently?

We are only in the earliest days of learning how to design for dementia. Hopefully, there will soon be a cure for these devastating diseases, making an article such as this a moot exercise. But until then, we must continue to delve into our creative minds, take chances and discover what works and what doesn’t for this population. Nursing home/assisted living managers should help designers understand how people with dementia perceive and interpret their worlds. Only when equipped with this knowledge can we designers begin to address these problems with the tools that we have available to us.

Mark Warner, AIA, is the author of The Complete Guide to Alzheimer’s Proofing Your Home, the first book in the Homes That Care series on age related conditions and creating homes for those suffering from them. His firm, Ageless Design, Inc., offers consultation and assistance in the design of environments for seniors. For more information, call (561) 745-0210, visit the Web site at www.agelessdesign.com or e-mail ewarner@agelessdesign.com.

The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent

alzheimer’s, assisted living, behavior, caregiver, loved one, nursing home, validation, Validation Therapy

This is a very good article on this topic, worth reading and thinking about. If you suspect that one of your loved one’s is suffering from Alzheimer’s you might consider testing their ability to smell odors.

On a Personal Note: When I first read about this several years ago I tested my mother’s sense of smell. Basically, she can’t smell any odors.

Source of this article The Washington Post.com

Dulled Sense of Smell Might Predict Alzheimer’s

By Ed Edelson
HealthDay Reporter

TUESDAY, July 3 (HealthDay News) — Losing your sense of smell might be an early sign of cognitive decline, a new study finds.

“It has been reported before that people who already have mild cognitive impairment have difficulty with odors,” noted lead researcher Robert S. Wilson, a professor of neuropsychology at the Rush Alzheimer’s Disease Center in Chicago.

However, “no one has started [a study] with people with no cognitive impairment at all,” he said. But the new research, published in the July issue of theArchives of General Psychiatry, did just that.

In the study, Wilson’s group enlisted 589 older people, averaging close to 80 years of age, to take a test in which 12 common odors were placed under their noses. The participants were scored from one to 12 on their ability to match a smell to one of four alternatives.

They then were evaluated once a year for five years in tests of neurological and cognitive function.

Over that time, 177 of the participants developed the kind of mild cognitive impairment that can be a warning sign of future Alzheimer’s disease. The risk of developing such mental impairment was associated with a decrease in odor identification ability. Those who scored below the average score on the odor identification test were 50 percent more likely to develop mild cognitive impairment than those who scored above average, the researchers say.

The study results fit in with one leading theory surrounding the development of Alzheimer’s disease, Wilson said. That notion centers on the idea that Alzheimer’s begins with trouble in certain specialized areas of the brain, then spreads more widely until it involves the major thinking areas.

“There could be several years in which you wouldn’t expect to see problems with thinking but problems with functions such as smell,” he said.

The theory received lukewarm support from Dr. Sam Gandy, chairman of the Alzheimer’s Association’s National Scientific Advisory Council. Gandy is also director of the Farber Institute for Neurosciences at Thomas Jefferson University in Philadelphia.

“The idea is attractive, since the smell area of the brain is involved in the course of the disease,” Gandy said.

And yet, “reports that problems with a person’s sense of smell may be an early indicator of memory and thinking problems have appeared in the scientific literature at several occasions over the past 20 years,” he pointed out. Still, “no observation has been particularly strong nor have they been replicated by other scientists,” Gandy said.

More detailed studies are needed to assess the possibility of a connection between smelling ability and changes in mental function, he said.

“These tests should be tested on one group of people and then subjected to double-blind assessment in a second or third population before scientists begin to make claims that a particular smell test is associated with or predictive of imminent or incident cognitive dysfunction,” he said.

But Richard L. Doty, director of the Smell and Taste Center of the University of Pennsylvania Medical Center in Philadelphia — who developed the smell test used in the Wilson study — said the test has already been used on a limited basis in clinical practice.

“It was given to relatives of persons with both Parkinson’s disease and Alzheimer’s disease who were normal,” Doty said. “It showed that there was a loss of the ability to distinguish odors in those who eventually converted to the disease. Some neurologists have been using it in differential diagnosis.”

The test used in the Rush study can be administered (or taken by the person being tested) in about five minutes, Wilson said. “But I’m not recommending that everyone run out and have this test administered,” he said.

Diagnosis using smell testing or other methods would do a patient no real good, Wilson reasoned, because there’s still no effective treatment to halt the progression of Alzheimer’s disease. However, “the field is expecting that that will change in the next few years,” he said.

Medications that target the accumulation of amyloid deposits in the brain, which many believe to be involved with the development of Alzheimers disease, are showing promise, Wilson said. “If these agents are effective in combating the accumulation of amyloid in the brain, theycouldalter the course of the disease,” he said.

Detection of the condition in its earliest stage would then be desirable, because “the treatments should be applied as early as possible,” Wilson said.

Even then, a smell test alone would not be the best early detection method, he stressed. “There are several other strategies looking at other ways to detect it early,” Wilson said. “There would likely be a variety of methods, a smell test in conjunction with others.”

More information

There’s more on Alzheimer’s disease at the Alzheimer’s Association.

SOURCE: Robert S. Wilson, Ph.D., professor, neuropsychology, Rush Alzheimer’s Disease Center, Chicago; Sam Gandy, M.D., Ph.D., director, Farber Institute for Neurosciences, Thomas Jefferson University, Philadelphia and chairman, Alzheimer’s Association’s National Scientific Advisory Council; Richard L. Doty, Ph.D., director, Smell and Taste Center, University of Pennsylvania Medical Center, Philadelphia; July 2007Archives of General Psychiatry

The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent

Taken directly from the Rush Memory and Aging Project news release.

How often older adults read a newspaper, play chess, or engage in other mentally stimulating activities is related to the risk of developing Alzheimer’s disease, according to a study by researchers at Rush University Medical Center.

Frequent Brain Stimulation in Old Age Reduces Risk of Alzheimer’s Disease

(CHICAGO) – How often older adults read a newspaper, play chess, or engage in other mentally stimulating activities is related to the risk of developing Alzheimer’s disease, according to a study by researchers at Rush University Medical Center published June 27 in the online edition of Neurology®, the medical journal of the American Academy of Neurology.

For the study, more than 700 people in Chicago with an average age of 80 underwent yearly cognitive testing for up to five years. Participants were part of the Rush Memory and Aging Project, a longitudinal study of more than 1,200 older people. Of the participants, 90 developed Alzheimer’s disease. Researchers also performed a brain autopsy on the 102 participants who died.

The study found that a cognitively active person in old age was 2.6 times less likely to develop dementia and Alzheimer’s disease than a cognitively inactive person in old age. This association remained after controlling for past cognitive activity, lifetime socioeconomic status, and current social and physical activity.

Researchers say the findings may be used to help prevent Alzheimer’s disease.

“Alzheimer’s disease is among the most feared consequences of old age,” said study author Robert S. Wilson, PhD, a neuropsychologist at the Rush Alzheimer’s Disease Center. “The enormous public health problems posed by the disease are expected to increase during the coming decades as the proportion of old people in the United States increases. This underscores the urgent need for strategies to prevent the disease or delay its onset.”

Wilson says the study also found frequent cognitive activity during old age such as visiting a library or attending a play, was associated with reduced risk of mild cognitive impairment, a transitional stage between normal aging and dementia, and less rapid decline in cognitive function.

The study was supported by grants from the National Institute on Aging and the Illinois Department of Public Health.

The Rush Alzheimer’s Disease Center is one of 29 NIA-supported Alzheimer’s Disease Centers across the U.S. which conduct basic science, clinical, and social and behavioral research on dementia and AD. General information on aging and aging research can be viewed at the NIA’s home website, www.nia.nih.gov. For more information on the Rush Alzheimer’s Disease Center, visit www.rush.edu.

The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent

Fundraising efforts for the Johnnie B. Byrd, Sr. Alzheimer’s Center & Research Institute’s are taking off. The Fraternal Order of Eagles chose the Institute as their charity of the year and raised $120,000 so far for the non-profit organization.

Vist the Johnnie B. Byrd, Sr. Alzheimer’s Center & Research Institute website.

Source Gulf Breeze News
Fundraising efforts for the Johnnie B. Byrd, Sr. Alzheimer’s Center & Research Institute’s are taking off. The Fraternal Order of Eagles chose the Institute as their charity of the year and raised $120,000 so far for the non-profit organization.

“The money raised for the Institute is the most money ever raised by the Florida Fraternal Order of Eagles and Auxiliary and we are proud to partner with this outstanding organization,” says Ernie Repp, Immediate Past President of Florida Fraternal Order of Eagles.

“Building this partnership has now assured us more money for research. This is critical because the number of Alzheimer’s cases are soaring. This funding will help our needs as we develop our world class Institute and continue our mission to find a cure for Alzheimer’s,” says Huntington Potter, PhD, lead scientist and CEO of the Byrd Alzheimer’s Research Institute.

The Johnnie B. Byrd Sr., Alzheimer’s Center & Research Institute supports cutting edge research on Alzheimer’s disease in our own affiliated laboratories and clinics throughout the world. The Byrd Alzheimer’s Institute is a non-profit organization that believes through collaboration, together we can win the battle against Alzheimer’s disease. Contributions are tax deductible.

The Fraternal Order of Eagles is an international nonprofit organization whose mission unites fraternally in the spirit of liberty, truth, justice, and equality, to make human life more desirable by lessening its ills, and by promoting peace, prosperity, gladness and hope.

The Eagles raise money each year for a non-profit charity selected by the President and Auxiliary. They have members in over 1,700 local Aeries and Auxiliaries in the United States of America and Canada that help make their communities a better place to live in. It is estimated that all donations from their organization to communities, charities, and social programs will exceed $10,000,000 a year and as a result will take one step closer to finding a cure for diseases that effect all of our lives.

Preliminary studies have shown a reduced risk of Alzheimer’s disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

This study is currently recruiting patients.

Personal Note: I have been feeding my mother fish and giving her Omega 3 Oil daily for a couple of years. I believe it is beneficial.

For a complete description of the trial including eligibility requirements go to the Clinical Trials Page

Official Title: A Randomized Double-Blind Placebo-Controlled Trial Of The Effects Of Docosahexaenoic Acid (DHA) In Slowing The Progression Of Alzheimer’s Disease

Study Type: Interventional

Study Design: Treatment, Randomized, Double-Blind, Placebo Control, Parallel Assignment, Efficacy Study

Further study details as provided by National Institute on Aging (NIA)

Primary Outcome Measures:
Changes in rate of cognitive and functional decline measured by ADAS-Cog and CDR-SOB

Preliminary studies have shown a reduced risk of Alzheimer’s disease (AD) in people consuming increased amounts of fish in their diets. Many of the health benefits of fish are attributed to the abundance of omega 3 fatty acids. Docosahexaenoic Acid (DHA) is the most abundant omega 3 fatty acid in the brain. Data from several animal models supports the hypothesis that DHA may be an effective treatment for AD by means of anti-amyloid, antioxidant, and neuroprotectant mechanisms.

In this study, 400 individuals with mild to moderate AD will participate at approximately 53 study sites throughout the US for 18 months. Participants will be randomized so that 60% will receive approximately 2 grams of DHA, divided into 4 capsules, 2 capsules taken twice a day, while 40% receive an identical placebo.

Potential participants will go to their study site for a screening visit, where eligibility is determined, and if accepted, for a baseline visit where cognitive status, behavioral status, functional status, and global severity of dementia will be assessed. Vital signs and biomarker labs will also be obtained. Subsequent visits will occur every three months for medication checks and, every 6 months, further assessments, physical exams, and labs.

Some participants will also take part in MRI (magnetic resonance imaging) and/or CSF (cerebrospinal fluid) sub-studies. For the MRI sub-study, scans will be done prior to beginning the study medication, and again after 18 months. Likewise, for the CSF sub-study, a lumbar puncture will be done prior to beginning the study medication, and again after 18 months.

Enrollment is restricted to individuals who consume no more than 200 mg of DHA per day, which is almost 300% of the average daily intake in an American diet. Individuals who take fish oil or omega 3 fatty acid supplements are also not eligible. Each visit will include completion of a very brief food frequency questionnaire to monitor dietary DHA levels.

REVEAL, the Risk Evaluation and Education for Alzheimer’s Disease Study is a multi-center funded research project.

The goal of REVEAL is to provide healthy adults with genetic susceptibility testing and information about their chances to develop Alzheimer’s disease.

Please Note: If you know someone that is related to a person suffering from Alzheimer’s disease please make them aware of this new and important study.

Genetics and Alzheimer’s Risk

Eligible participants will be asked to conduct a phone interview during which questions about attitudes toward AD will be asked. Participants will be given the opportunity to meet with a genetic counselor to discuss any family history of AD and learn about the gene associated with AD. Participants will then have the opportunity to have their blood drawn for gene testing and receive an AD risk assessment.

Information from the REVEAL Study will be used to determine if it is beneficial to educate people about their potential genetic risk for AD.

Where is the study taking place?

Locally. REVEAL Study appointments are held at the University of Michigan at Ann Arbor. Additional study sites include: Case Western Reserve University School of Medicine (Cleveland, OH); Howard University (Washington, DC); and Boston University School of Medicine (Boston, MA).

Go to the Reveal website to learn more, to apply or to get additional inofrmation.

Genetics and Alzheimer’s Risk
Reveal

The latest worldwide estimate of Alzheimer’s disease prevalence shows that 26.6 million people were living with the disease in 2006, according to research reported today at the 2nd Alzheimer’s Association International Conference on Prevention of Dementia in Washington, D.C.

The researchers predict that global prevalence of Alzheimer’s will quadruple by 2050 to more than 100 million, at which time 1 in 85 persons worldwide will be living with the disease. More than 40 percent of those cases will be in late stage Alzheimer’s requiring a high level of attention equivalent to nursing home care.

Read more of this study and its findings.

The Healthy Brain Initiative
The Healthy Brain Initiative

The Road Map highlights the importance of maintaining and improving cognitive health to the overall health of the nation. The Road Map is both a call to action and a guide for implementing a coordinated approach to raising the public’s awareness about cognitive health and increasing the nation’s commitment to understanding both the risks for cognitive decline and ways of maintaining brain health.


Washington D.C., June 10, 2007

In order to maintain and improve the cognitive performance of all adults, the Centers for Disease Control and Prevention (CDC) and the Alzheimer’s Association today released the first-ever National Public Health Road Map to Maintaining Cognitive Health (Road Map) at the 2nd Alzheimer’s Association International Conference on Prevention of Dementia in Washington, D.C.

The Road Map highlights the importance of maintaining and improving cognitive health to the overall health of the nation. The Road Map is both a call to action and a guide for implementing a coordinated approach to raising the public’s awareness about cognitive health and increasing the nation’s commitment to understanding both the risks for cognitive decline and ways of maintaining brain health.

“Public health has a key role to play in ensuring that added years for older Americans are quality years, including both physical health and cognitive health,” said CDC Director, Dr. Julie L. Gerberding. “The National Public Health Road Map to Maintaining Cognitive Health represents a reason for optimism coupled with a clear need for action. The Road Map provides critical action steps that organizations and agencies can take to move cognitive health into the public health arena in a strategic, coordinated manner.”

The components of healthy cognitive functioning include language, thought, memory, judgment, perception and the ability to carry out the activities of daily living.

Public health efforts to date have largely focused on physical health. It is clear, however, that the loss of cognitive function carries life-altering implications for individuals and families, high costs for healthcare systems, and a tremendous burden on society. As Americans age, there is increased risk of cognitive decline, including a dramatic rise in Alzheimer’s disease and other dementias. This in turn contributes to caregiver burden, spiraling health care costs and economic hardship.

Drawing on the most recent developments in science, the Road Map highlights physical activity and reducing cardiovascular risk as key factors for understanding and contributing to cognitive health. In May 2006, CDC and the Alzheimer’s Association invited national experts to review public health prevention research related to cognitive health, and to identify specific recommendations for addressing risk factors that promote and protect cognitive health. They concluded that the following factors may be associated with the maintenance of cognitive health: 1) the prevention or control of high blood pressure, cholesterol, diabetes, overweight, and obesity; 2) smoking prevention or cessation; and 3) being physically active. Other factors that may be associated with maintaining cognitive function include social engagement, a “heart-healthy” diet, and emotional supports, though these have much more limited research evidence.

While there is yet no conclusive evidence that brain-healthy behavior can prevent or alter the course of Alzheimer’s, it has been suggested that maintaining or improving the public’s cognitive health could have enormous social and economic value.

“Efforts to maintain and improve public health have focused mostly ‘below the neck,’ addressing diseases and conditions affecting the heart and other bodily organs,” said Harry Johns, Alzheimer’s Association president and CEO. “The National Public Health Road Map to Maintaining Cognitive Health shifts the focus ‘above the neck’ to draw attention to maintaining the health of our brains, which arguably is the most important organ in our bodies. At the Alzheimer’s Association, we understand the devastation caused by cognitive impairment, Alzheimer’s disease and other dementias. We sincerely believe that efforts such as this that contribute to maintaining cognitive function will save the nation billions of dollars and prevent unnecessary heartache and hardship for millions of families.”

The Road Map provides 44 recommendations for action. In addition to strategies for assessing public perceptions and educating the public about myths and realities of cognitive health, the document calls for more research to better understand the risks for cognitive decline and design interventions to prevent it.

Background

Congress recognized the importance of brain health in 2005 when it appropriated funds to the CDC to address “educating the general public and health professionals on ways to reduce the risks of developing Alzheimer’s disease by maintaining a healthy lifestyle.” In response, the CDC formed a partnership with the Alzheimer’s Association and convened a diverse group of advisors, including representatives from the National Institute on Aging, the Administration on Aging, AARP, American Society on Aging, state public health departments and other public and private sector organizations to begin to explore this uncharted territory. The Road Map released today is the culmination of an 18-month endeavor that included the thoughtful input from dozens of scientists, public health experts and community advocates.

Cognitive decline can range from memory loss and mild cognitive impairment to Alzheimer’s disease and other dementias. In the United States, the societal weight of cognitive impairment has primarily manifested itself in the high prevalence of Alzheimer’s disease, the seventh leading cause of death among all adults. With more than 5 million Americans with Alzheimer’s disease and other dementias and 78 million baby boomers causing the most dramatic population shift in the country’s history, there is growing concern and fear among adults about the loss of mental capacity.

More details from the cognitive health road map

The Road Map serves a dual role in identifying the critical need for the American public to have accurate information about cognitive health and to provide mechanisms that will eventually lead to prescriptions for behavior and community responses that would help maintain and improve brain health. It also offers the public solid, evidence-based research to dispel myths about cognitive issues. This includes the myth that as one ages one should automatically expect an irreversible mental decline, or that dementia is universal and inevitable. The Road Map provides clear steps to help move brain health and cognitive fitness into the mainstream of public health efforts, just as has been done with efforts to reduce heart disease, prevent cancer, and maintain physical fitness.

The Road Map’s recommendations are firmly grounded in science. Among the most important are:
• Conducting reviews of current literature to determine the physical activity prescriptions (type, frequency, duration and activity) that are effective in enhancing cognitive function in order to provide the public with specific recommendations targeted to improving brain health.
• Supporting basic and public health research, including controlled clinical trials on physical activity and cardiovascular risk, which will help determine the specific role these elements play in cognitive health and the amounts of each that are most beneficial.
• Establishing and maintaining a web-based cognitive health clearinghouse that offers a “one stop shop” for valid and tested information that provides consumers and healthcare professionals with cognitive health information and tools.
• Developing a population-based surveillance system that looks at the burden of cognitive health at the community level and determines targeted strategies that are customized to assist those in specific communities.
• Including cognitive health in Healthy People 2020, a set of health objectives for the nation that also serves as the foundation for state and community public health plans.

Next steps

Effective implementation of the recommendations outlined in the Road Map require a commitment from the public health community; policymakers at the federal, state and local levels; and a public informed about cognitive health issues.

“Cognitive health is gaining increasing attention and it represents a growing area for research and action,” Gerberding said. “By embracing cognitive health as a priority issue, legislators and the public health community would be mobilized to study, identify, and implement effective interventions that preserve it. Our challenge is to offer a coordinated and unified national effort. The Road Map meets that challenge by laying out a shared vision that builds on the foundation of the work done to date and shapes the work of the future.”

“We have to take what we know, build on it and share the knowledge, resources, and tools with the public and health community. It will take a coordinated effort, but the Road Map provides a solid platform to make this happen,” Johns said. “We look forward to building on the partnership between the CDC and Alzheimer’s Association to continue to bring cognitive health to the forefront as a national priority.”

Concepts included in the Road Map are already helping guide community-based brain health programs. One such effort is a demonstration program sponsored by the Alzheimer’s Association, with support from the CDC, targeting brain health promotion among African-American baby boomers. The program is being implemented in Atlanta and Los Angeles; it addresses a critical public health problem that is especially challenging among African-Americans, i.e. higher rates of cardiovascular disease, diabetes, obesity and high blood pressure, all of which increase the risk of cognitive decline, Alzheimer’s disease and other dementias. This multi-year demonstration, which is in the early stages, will begin reporting initial results next year.

About the Alzheimer’s Association International Conference Prevention of Dementia
The Alzheimer’s Association International Conference on Prevention of Dementia is the world’s only multidisciplinary forum to convene professionals from the fields of bench research, drug discovery, medicine, care and public policy. More than 1,000 dementia experts from around the world will gather to present and discuss the latest detection, treatment and prevention research, and address how together we can prevent Alzheimer’s from becoming a global health crisis. The 2007 Alzheimer’s Association Prevention Conference will be held June 9-12 at the Marriott Wardman Park Hotel in Washington, D.C.

About the Alzheimer’s Association

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research, provide and enhance care and support for all affected, and reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

About the Centers for Disease Control and Prevention (CDC)

As the sentinel for the health of people in the United States and throughout the world, CDC strives to protect people’s health and safety, provide reliable health information, and improve health through strong partnerships. CDC’s mission is to promote the health and quality of life by preventing and controlling disease, injury and disability. CDC is one of the 13 major operating components of the U.S. Department of Health and Human Services, the principal agency in the United States government for protecting the health and safety of all Americans and for providing essential human services, especially for those people who are least able to help themselves. For more information, visit www.cdc.gov.

Download the National Public Health Road Map to Maintaining Cognitive Health (Road Map)

Full document (PDF, 70 pages)

Executive summary (PDF, 4 pages)

Contact:
Alzheimer’s Association media line: 312.335.4078 or media@alz.org
Prevention Conference press room, June 9-12: 202.745.2108