Tag Archives: Alzheimer’s
From his perch on Skull Rock, they looked like pale eggs sunny-side up moving just beneath the water’s surface. Some kind of jellyfish. Half a dozen, pulsating vigorously through the black surf like muscular parachutes.
Odd. Jack Koryan had spent several summers of his childhood out here and could remember only a few occasions seeing jellyfish in the cove, mot of them washed ashore by the night tide–dinner-plate-sized slime bombs with frilly aprons and long fat tentacles. But these creatures were small round globs, translucent jelly bells with noting visible in trail.
Maybe some tropical species that the warm water brought in, he thought.
Jack watched them pump by in formation, driven by primitive urgings and warm eddies. Somewhere he had read that jellyfish were ninety-five percent water–creatures with no brains, bones, or blood. What enabled them to react to the world around them was a network of nerves. What a lousy fate, Jack thought–to relate to the world only through nerve endings: a life devoid of thought, passion, or memory.
Writer Joseph Finder (New York Times bestselling author of Paranoia) writes that “Gary Braver’s Flashback combines an irresistible premise with the medical intrigue of Robin Cook and the scientific plausibility of Michael Crichton–a powerful, gripping, and moving tale with a beating heart.”
What do jellyfish and your brain have in common? Scientists at the 2010 Alzheimer’s Association International Conference in Honolulu report that the jellyfish protein apoaequorin may improve cognitive function in people who have memory problems.
We recently received the devastating news that another Loved One has symptoms of early dementia.
The number of Alzheimer’s patients is expected to increase dramatically in coming years, straining the health care system.
Scientists have not discovered the cause nor devised effective treatments. Even diagnosis is difficult.
In the absence of therapies, attention has turned to teaching the skills necessary to cope with demented patients.
Increasingly caregivers are encouraged to validate the feelings and perceptions of the person with Alzheimer’s.
The news about advances in Alzheimer’s is not encouraging; however, we are becoming better educated about and aware of this Soul Thief. Hopefully, in my lifetime, there will be Real Answers.
There is no cure for Alzheimer’s and no way to prevent it. Scientists haven’t even stopped arguing about whether the gunk that builds up in the Alzheimer’s brain is a cause or an effect of the disease. Alzheimer’s is roaring down — a train wreck to come — on societies all over the world. People in this country spend more than a $1 billion a year on prescription drugs marketed to treat it, but for most patients the pills have only marginal effects, if any, on symptoms and do nothing to stop the underlying disease process that eats away at the brain. Pressed for answers, most researchers say no breakthrough is around the corner, and it could easily be a decade or more before anything comes along that makes a real difference for patients.
Meanwhile, the numbers are staggering: 4.5 million people in the United States have Alzheimer’s, 1 in 10 over 65 and nearly half of those over 85. Taking care of them costs $100 billion a year, and the number of patients is expected to reach 11 million to 16 million by 2050. Experts say the disease will swamp the health system.
It’s already swamping millions of families, who suffer the anguish of seeing a loved one’s mind and personality disintegrate, and who struggle with caregiving and try to postpone the wrenching decision about whether they can keep the patient at home as helplessness increases, incontinence sets in and things are only going to get worse.
Drug companies are placing big bets on Alzheimer’s. Wyeth, for instance, has 23 separate projects aimed at developing new treatments. Hundreds of theories are under study at other companies large and small. Why not? People with Alzheimer’s and their families are so desperate that they will buy any drug that offers even a shred of hope, and many will keep using the drug even if the symptoms don’t get better, because they can easily be convinced that the patient would be even worse off without it.
It is telling, maybe a tacit admission of defeat, that a caregiving industry has sprung up around Alzheimer’s. Books, conferences and Web sites abound — how to deal with the anger, the wandering, the sleeping all day and staying up all night, the person who asks the same question 15 times in 15 minutes, wants to wear the same blouse every day and no longer recognizes her own children or knows what a toilet is for.
The advice is painfully and ironically reminiscent of the 1960s and ’70s, the literal and figurative high point for many of the people who are now coping with demented parents. The theme is, essentially, go with the flow. People with Alzheimer’s aren’t being stubborn or nasty on purpose; they can’t help it. Arguing and correcting will not only not help, but they will ratchet up the hostility level and make things worse. The person with dementia has been transported into a strange, confusing new world and the best other people can do is to try to imagine the view from there and get with the program.
. . . Basically, just tango on. And hope somebody will do the same for you when your time comes. Unless the big breakthrough happens first.
[Zen and the Art of Coping with Alzheimer’s by Denise Grady]
More than one of my friends has had or now has Alzheimer’s disease or is/was a caregiver for a loved one with dementia. One long-time friend recently found a ‘home’ for her husband who has Alzheimer’s, stating that she did this out of her love for Richard. She found the best possible facility and visits him regularly. He is doing well in a place that is staffed with professionally trained caring people.
Another friend (an only child) lovingly cared for her mother for many years until her mom’s death. I mentioned to a relative, after learning her mother died with Alzheimer’s, that this disease is like cancer in that it affects (either directly or peripherally) every family. I believe this to be true and as I have posted before, when I am interested in anything, it seems as though I research it ad nauseam. It could be me. It could be me in either situation – as one with the disease or as a caregiver for a loved one.
It could be.
The statistics about Alzheimer’s are alarming and I think that it behooves all of us to learn about this disease.
Alzheimer’s disease was the seventh-leading cause of death across all ages in the United States in 2006. It was the fifth-leading cause of death for those aged 65 and older.
Almost 11 million Americans provide unpaid care for a person with Alzheimer’s disease or another dementia. These unpaid caregivers are primarily family members but also include friends. In 2009, they provided 12.5 billion hours of unpaid care, a contribution to the nation valued at almost $144 billion. In Texas, an estimated 852,820 caregivers annually provide 971.2 million hours of uncompensated care valued at $11.2 billion.
The 2009 NAC/AARP survey found that 14 percent of caregivers of people with Alzheimer’s and other dementias were under age 35; 26 percent were aged 35–49; 46 percent were aged 50–64; and 13 percent were aged 65 and over.
Caring for a person with Alzheimer’s or another dementia is often very difficult, and many family and other unpaid caregivers experience high levels of emotional stress and depression as a result. Caregiving also has a negative impact on the health, employment, income and financial security of many caregivers.
“The plaque is not the main culprit in terms of toxicity,” said Dr. Scott McGinnis of Harvard Medical School and Brigham and Women’s Hospital in Boston, who treats Alzheimer’s patients and runs clinical trials testing new Alzheimer’s drugs.
An altered version of the cancer drug Gleevec could form the basis of a new class of drugs that block the development of brain-damaging plaques in Alzheimer’s disease, U.S. researchers said on Wednesday.They said they hoped drugmakers could tinker with the formula for Gleevec, a pill that has transformed the treatment of one type of leukemia, to make it work safely in the brain.
Question: What are some of the biggest myths surrounding Alzheimer’s?Gary Small: I think one of the biggest myths is that there are no effective treatments. Now we do have effective treatments, but they’re probably not as effective as people would like. They don’t cure the disease, but they do help temporarily. They can keep people out of the nursing home for a year or more and we’re finding that if we treat people very early that we can have an impact, so I think that’s probably one of the biggest myths I hear about.
“The proposition, that estrogen’s effects on our minds and our bodies may depend heavily upon when we first start taking it, is a controversial and very big idea. It has a working nickname: “the timing hypothesis.” Alzheimer’s is only one part of it. Because the timing hypothesis adds another layer of complication to the current conventional wisdom on hormone replacement, it has implications for heart disease, bone disease and the way all of us women now under 60 or so — the whole junior half of the baby boomers, that is, and all our younger sisters — could end up re-examining, again, everything the last decade was supposed to have taught us about the wisdom of taking hormones.”
The Alzheimer’s Association Comfort Zone™, powered by Omnilink, is the first comprehensive location management system designed specifically for Alzheimer’s, giving people with the disease more freedom and independence in their community while providing their family some peace of mind. Comfort Zone is a Web-based application that works with various location devices throughout the progression of the disease to proactively communicate the location of the person with Alzheimer’s within two to 30 minutes, based on the family’s selected plan. Comfort Zone also offers families assistance with 24/7 monitoring center services and access to emergency health records from the MedicAlert Foundation.
As Americans continue to live longer, prevalence of Alzheimer’s is expected to skyrocket from the current 5.3 million Americans to as many as 16 million by 2050, according to the Alzheimer’s Association 2009 Alzheimer’s Disease Facts & Figures report. In addition to its slow, fatal progression, Alzheimer’s poses immediate safety concerns for people living with the disease and enormous challenges and stress for their 10 million family caregivers.
“As the Alzheimer’s epidemic gains momentum, the Alzheimer’s Association is committed to educating families about how to keep people with Alzheimer’s successfully in the community for as long as possible,” said Beth Kallmyer, MSW, director of Family and Information Services at the Alzheimer’s Association. “Comfort Zone is an interactive safety service that allows people with the disease to be more active and caregivers to be more confident whether they are in the same house, down the street, at work or across the country.”
Comfort Zone combines the latest technology with flexibility, allowing families to change devices and plans as a person’s disease progresses and monitoring needs change. Using GPS and cellular technologies with online mapping, Comfort Zone allows the entire family to proactively determine the location of the person with Alzheimer’s. Families log into a secure, password-protected Web site similar to logging into most email systems and proactively establish safety zones. If the person with Alzheimer’s travels beyond the pre-set zones, they receive alerts via text or email within 15 or 30 minutes, depending on the device and service package purchased. These zones and alerts can be adjusted to meet the family’s needs as the disease progresses. Additionally, families can determine location within two minutes by initiating a “Find Me” or a longer “Follow Me” session, which provides updates every two minutes for one hour.
“Omnilink is pleased to partner with the Alzheimer’s Association and power the Comfort Zone application,” said Wain Kellum, CEO of Omnilink. “This is a great opportunity to use our advanced location-based services platform to give families flexible care options and choices throughout the progression of the disease.”
Bill Bailey, an Alzheimer’s Association Early-Stage Advisor living with the disease, and his wife Kitty Kennedy tested Comfort Zone from their Richmond, Va., home. Bailey, an avid exerciser, found he was able to ride his bike again and even drove 600 miles to camp with his brother-in-law for the first time since diagnosis. “I felt more confident that I would not get lost, because my wife could keep up with me,” said Bailey, Alzheimer’s Association Early-Stage Advisor. Kennedy adds, “As a caregiver, it gives me peace of mind to know that Bill is able to move about freely yet safely even if I’m at work, running errands or taking a break. With Comfort Zone in our back pocket, we bought ourselves more time and independence.”
“In the past, location management services and devices were bulky, complicated and prohibitively expensive. Advances in technology continue to make these solutions more discrete, simple and affordable offering families a choice,” said Kallmyer. “Comfort Zone is as easy as turning on a computer, receiving a text message or calling the monitoring center.”
The price of the Comfort Zone service packages varies, beginning at $42.99 a month with a $45.00 activation fee, similar to most cell phone services. For more information or to purchase Comfort Zone, visit the Alzheimer’s Association at http://www.alz.org/comfortzone or call 1-877-ALZ-4850 (1-877-259-4850).