iPhone app iPad app Android phone app Android tablet app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Maria Shriver

GET UPDATES FROM Maria Shriver
 

Alzheimer's: A Baby Boomer Epidemic

Posted: 05/07/09 06:58 PM ET

I am a child of Alzheimer's. For many years, my father, Sargent Shriver, would testify before Congress for increased funding for his beloved Peace Corps -- and for all the War On Poverty programs he started. My father was an idealistic, intelligent, optimistic public servant, sharp and witty, his mind a beautifully-tuned instrument that left people in awe and inspired. That was then...today he doesn't know my name or who I am. When my Dad was diagnosed in 2003, I felt confused, powerless and alone. There was little information -- and even less hope. My mother, my four brothers and I felt we were entering a world that was terrifying and incomprehensible. Like cancer, people didn't talk about Alzheimer's back then -- they whispered about it. It was a diagnosis shrouded in shame.

We struggled with learning about medication and care-giving -- with issues of our father's diminishing independence. We tried to explain to him why he could no longer drive or do many of the things he loved most in this world, like giving speeches on public service. When the invitations came in, we would just send his regrets. When people look at Alzheimer's families from the outside, they see the dependent, childlike parent now cared for by their offspring -- and it seems that the roles are simply reversed. Not so. The truth is, no matter what our age, we feel like children. No matter who you are, what you've accomplished, what your financial situation is -- when you're dealing with a parent with Alzheimer's, you yourself feel helpless. The parent can't work, can't live alone, and is totally dependent, like a toddler. As the disease unfolds, you don't know what to expect. As a doctor once told me, "Once you've seen one case of Alzheimer's...you've seen one case of Alzheimer's."

I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."

Then, almost out of nowhere, came what I call The Alzheimer's turning point. In March of 2007, a national newspaper reported that the number of people with Alzheimer's was ballooning -- rising by 10% in just the previous five years. It reported that fully 13% of Americans had Alzheimer's -- that meant one in eight people over the age of 65. And unless a cure were found, there would be more than 13 million people with Alzheimer's by 2050. The number has been revised even further upward since then.

That was the wakeup call Baby Boomers needed. After all, we are the generation who believed our brain-span would match our life-span. But now we were confronted with an epidemic -- an epidemic that wasn't just happening to "them." An epidemic that would happen to "us," too. And that scared us to death. All of a sudden, it seemed to me that people really started paying attention, and Alzheimer's became front-page news.

On Mother's Day, May 10th, HBO will air and I will executive produce the most comprehensive television event ever about Alzheimer's disease called The Alzheimer's Project -- focusing on the cutting-edge science, the issues of care-giving, how one lives with the disease, and the children and grandchildren of Alzheimer's.

It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.

Seventy percent of people with Alzheimer's live at home, cared for by family and friends. There are nearly 10 million Americans providing 8.4 billion hours of unpaid care to people with Alzheimer's disease or other dementias - valued at $89 billion. And believe it or not, there are getting to be almost as many kids actually "babysitting" a grandparent with Alzheimer's at home as kids babysitting children. That's where we are. Of course, most of the unpaid care-giving is done by women -- but luckily, that's also changing. Increasingly, men are stepping up to the plate.

Which brings me back to my brothers. I am in awe of what they do. My brothers take my Dad out to the Orioles games. They sit and joke with him, talk guy-talk to him. They take him to their kids' piano recitals and basketball games. Former Peace Corps volunteers will see him, know he has Alzheimer's, and still come up to him. They take his hand, and tell him stories. It doesn't matter that he doesn't know who they are -- or that he doesn't even remember the Peace Corps. What matters is that I know for sure he's comforted by the warmth of the human connection. I know that all in all, my family is one of the lucky ones. We're truly blessed we're able to keep our Dad at home. We're blessed to have the resources to pay patient and loving caregivers, who help us take care of our Dad and make him feel loved. I'm in awe of them, too. But millions of others aren't as lucky. Many are forced to quit jobs to stay home -- or go through the wrenching process of sending the parent away to a facility -- feeling judged and mortified and ashamed that they can't care for their loved one themselves. For so many, the financial, emotional, and spiritual cost is too much to bear.

My hope is that as the veil is lifted, as information and funds are available, they'll see that they're not alone -- that there's nothing to be ashamed of, that there's hope out there, because we're finally making Alzheimer's a national issue. We have to put Alzheimer's on the front burner, or it will not only devour our memories -- it will cripple our families, devastate our health care system, and decimate the legacy of our generation.

At the age of 93, my Dad still goes to Mass every day. And believe it or not, he still remembers the Hail Mary. But he doesn't remember me...Maria. I'd be lying if I didn't admit that that still makes me cry. But even so -- in the past 6 years, I have gone from hopelessness to hope. I have hope, because things are changing.

I've seen inter-generational day care centers where toddlers and Alzheimer's patients spend the day together. They eat together, they dance together, and have story-time together. It's quite moving to behold.

And we're building inter-generational playgrounds in California, so Sandwich Generation people like me -- who are taking care of kids and parents -- can go to one place with both of them.

I've also gotten hope from my own children. I watch how they talk and laugh with my father. They don't get bogged down in the sadness. My kids and my nieces and nephews all accept my Dad for who he is today -- and that's been a lesson for me.

I have hope because public hearings on The Hill -- high-profile work like the Alzheimer's Study Group report -- TV shows and books...are bringing Alzheimer's out of the back room and into the living room of our nation.

And most of all, I have hope that Congress will do the right thing, the courageous thing -- and use new The Alzheimer's Study Group's report as a roadmap for the real legislation we need, to stem the tide of what promises to be a horrific epidemic -- the disease itself, and its impact on our families and our health care system.

Many of us know of someone who is struggling with this disease in their family. We have seen the pain in the eyes of someone who has to watch powerlessly as it takes their loved one down and sometimes even tears at the fabric of the family itself. It will take courage to implement these bold recommendations. But I know that if we make that major commitment to brilliant scientists like the ones I have met in laboratories around the country -- they will produce the drugs to slow Alzheimer's down -- and perhaps even prevent it.

So let's act now and do what we have to do -- to spare millions of Americans in the future the pain of watching someone they love die a mysterious death on the installment plan. If we do -- I am convinced -- we Baby Boomers will be the generation who tells our grandchildren that believe it or not, there once was a time when there was no cure for Alzheimer's.

 
 
 

Follow Maria Shriver on Twitter: www.twitter.com/mariashriver

I am a child of Alzheimer's. For many years, my father, Sargent Shriver, would testify before Congress for increased funding for his beloved Peace Corps -- and for all the War On Poverty programs he...
I am a child of Alzheimer's. For many years, my father, Sargent Shriver, would testify before Congress for increased funding for his beloved Peace Corps -- and for all the War On Poverty programs he...
 
 
  • Comments
  • 110
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Favorites
Bloggers
Recency  | 
Popularity
Page: 1 2 3 4 5  Next ›  Last »  (5 total)
01:43 PM on 05/14/2009
Lastly, I would like to say...even though I said it is very expensive, it has kept my Mom from having to go to a care facility, which would be way more expensive than the treatments. It is worth every penny to have her be able to smile at me and talk to me...and have her here at home with me.

Thank you, Felicia McColl
famc17@yahoo.com
01:40 PM on 05/14/2009
Continued:
Dear Maria, please look into this for your own father, and see if he can be helped. Please let us know how we can get this approved. It is very expensive, and since it is an off-label use of an approved drug, we have spent my parents life savings to keep the treatments going for my Mom. We are now trying to re-fi the house, just to have enough money to do this. We need government intervention and approval now...after all...this is Alzheimer's. We don't have time to wait.

Please see my videos on youtube of my Mom at:
http://www.youtube.com/user/famc17

Please see Dr. Tobinick's website with more videos...these people are real, I have met them and I am one of them:
http://www.nrimed.com/

Sincerely, Felicia McColl
famc17@yahoo.com
01:39 PM on 05/14/2009
Continued: The treatment is "perispinal etanercept (Enbrel). The doctor is Dr. Edward Tobinick working out of the UCLA Medical Center. He discovered this treatment for AD while treating patients for sciatica pain using Enbrel. After 10 years, Johns Hopkins, funded by the United States Army, has finally done a Double-blind clinical trial for the sciatica treatment and found it to be a very valid and successful treatment. Dr. Tobinick has been fighting with the medical boards, Neurologists, pharmaceutical companies etc. because he is not a neurologist. They wanted nothing to do with him, and tried to stop the treatment by drumming up false accusations regarding his work. Dr. Tobinick didn’t give up, and has now treated over 3000 patients for sciatica. He has been treating patients with AD for over 4 years, and some of his patients have not declined in this disease since they started. One is a 93 year old delightful man! My Mom has had a tough year needing two surgeries for diverticulosis, yet she is cognitvely still aware, able to speak, eat and laugh better than a year ago. I've been waiting for this HBO series, hoping they would investigate this treatment, but they did not even contact him. It worries me, did Aricept contribute to the making of this show? Did they "limit" who was interviewed? I believe Maria Shriver would have wanted this in there if she had known about it, did her researchers hide this from her?
(cont in next post)
01:34 PM on 05/14/2009
I am the caregiver for my Mom and was devastated with the diagnosis of Alzheimer's. I didn't want to believe there was "nothing" that could be done, so I started doing my own research. There are many supplements that are thought to help, and the drugs like Namenda, Aricept and Exelon are thought to slow down the process...but none of these really work...at least not for very long and not for most people. I found hope in a study from a doctor here in California (Dr. Edward Tobinick). I was entrigued by his study which consisted of only 15 patients, but where all 15 improved cognitively and then maintained I have been working hard all year to spread the word that this treatment is real, and it really can help at the very least keep the patients from declining. I was so excited when Mom perked up after the first injection. I have written to the drug company Amgen who makes Enbrel, but they won't do any trials...maybe they have other interests and don't care about the millions of people with Alzheimer's Disease (AD)...after all, it would cost them approx S100,000,000 to do a study. I believe they figure the news will catch on and they will reap all the financial benefits without having to lift a finger. I've always been a very positive person and have always had faith in human empathy, until this last year. The treatment is "perispinal etanercept(Enbrel)
(continued in next post)
photo
HUFFPOST SUPER USER
jonolennon
To the toppermost of the poppermost!
11:04 PM on 05/10/2009
This bit about flu shots being related to Alzheimers has got me freaked! I guess I will take my chances of getting the flu from here on out!
08:25 PM on 05/10/2009
Im sorry to hear of your father Maria, I lost my grandmother to Alzheimers and my mom's younger brother is suffering as well right now in an institution.

By Daniel J. DeNoon
WebMD Health News
Reviewed by Louise Chang, MD

Oct. 6, 2006 -- THC, the key compound in marijuana, may also be the key to new drugs for Alzheimer's disease.
That's because the marijuana compound blocks the formation of brain-clogging Alzheimer's plaques better than current Alzheimer's drugs.
The finding -- in test-tube studies -- comes from the lab of Kim Janda, PhD, director of the Worm Institute of Research and Medicine at Scripps Research Institute.
"While we are certainly not advocating the use of illegal drugs, these findings offer convincing evidence that THC possesses remarkable inhibitory qualities, especially when compared to [Alzheimer's drugs] currently available to patients," Janda says in a news release.
"Although our study is far from final, it does show that there is a previously unrecognized molecular mechanism through which THC may directly affect the progression of Alzheimer's disease."
Janda's team found that THC blocks an enzyme called acetylcholinesterase, which speeds the formation of amyloid plaque in the brains of people with Alzheimer's disease.
The Alzheimer's drugs Aricept and Cognex work by blocking acetylcholinesterase. When tested at double the concentration of THC, Aricept blocked plaque formation only 22% as well as THC, and Cognex blocked plaque formation only 7% as well as THC.
This user has chosen to opt out of the Badges program
photo
08:51 PM on 05/10/2009
Fascinating study ... thanks. For those interested the link for this report from the peer-reviewed journal Molecular Pharmacology is included below. As Johnny Carson used to say ... "weird, wild stuff".

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2562334
HUFFPOST SUPER USER
stryker
07:37 PM on 05/10/2009
My mother died of Alzheiner's almost 25 years ago.It is a sad progression that begins with little forgetfulness like misplacing things, forgetting to close cabinet doors. As she was getting into her 60's it was just assumed to be senior moments. She could remember things from 50 years before, but not from 15 minutes. She'd get lost in her own neighorhood. My father died caring for her. That left us, with families of our own, to figure how to take care of her. Mother would get obstinateamd want to strike me. Then, she would be fine and almost lucid. One morning, at breakfast , she said, "I hate you." All I could do was laugh and say, "I love you, too, Ma." The worst times for her was when she was lucid and she knew there was something wrong or she would lose control of herself, and she would say to me, "I'm sorry." All I could say was, "Hey, you cleaned up after me all those years, now it's my turn." Alzheimer's turns an adult's life into reverse. At the end, my mother had turned into a 73-year old newborn with even less awareness. Now, as I am getting into my late 50s I wonder if the times I can't remember who sang what song or who played what role isn't the start of my own descent. And how will I and my family handle me if I do get Alzheimer's.
05:27 PM on 05/10/2009
I watched my mother-in-law succumb to dementia, so I do sympathize with Ms. Shriver's grief over her father's Alzheimer's disease. Alzheimer's does seem to be on the rise-- however, it's not due to environmental factors. It's due to the ever-longer life spans that medical science has given us.
When I was growing up (in the 1950s, 60s, 70s), I didn't know very many people over 80. They died in their 60s or 70s from natural causes. Men dropped dead regularly from heart attacks. It was a quick death, and while sad for those they left behind, they did leave without having lost their dignity and self-determination.
Everyone wants to live to be very old now, it seems--and without losing their physical or mental functions. Very few people ask the question, were we all really meant to live so long? Alzheimer's is a horrible disease, but it and other forms of senility are inevitable for a significant percentage of those who will live into their eighties and nineties. Should we seek for a cure for it? Sure. Along with the myriad other problems our world faces, like how we're going to provide fresh water, energy, and food for 9 billion people by mid-century, a large percentage of whom are going to be very, very old.
03:50 PM on 05/10/2009
I watched my grandmother sink into Alzheimers, then I watched my son sink into autism. It looks very similar. Someone you knew was a certain way starts to slip away. You watch it in horror and grief. And with Altzheimer's the person you want to talk to about it isn't there anymore. That is unspeakably painful.

I believe it's the same genes, it's just that it took her a lifetime to get the level of poisoning he got prenatally and after birth. Because then, I learned about heavy metal poisoning, toxins, and tipping points. Yes we've always in recorded history and our American famiy histories had children with issues and older people with diminishing abilities--because of injury and stroke--but also because in the past 150 years, we've been putting mercury in our teeth, and emitting heavy metals in our factories and food (High fructose corn syrup) and injecting mercury into babies and elderly in the form of flu and other vaccines. Its just that the tipping point, the poison point differs. The ability to process toxins differs.

The elderly and young are canaries in our coal mine. This tragedy may well be preventable. We can need to discover and reduce the toxins in our environment, and more controllably and immediately, in medicinals such as vaccines and in mercury fillings.

Also: Please check any elderly person slipping into dementia for celiac disease. Dementia if caused by celiac disease can be reveresed.
This user has chosen to opt out of the Badges program
photo
04:20 PM on 05/10/2009
Medical science tells us that neither Alzheimer's nor autism are caused by environmental factors. My sympathy goes out to you and your family, but sometimes really bad things happen to really good people. It stinks.
HUFFPOST SUPER USER
Pyrum
09:57 PM on 05/10/2009
The verdict is not yet in, because "medical science" is not really science. No pharmaceutical company is going to fund research proving their products are dangerous.
This user has chosen to opt out of the Badges program
photo
10:21 AM on 05/10/2009
Cheers Maria, thanks for such a compassionate warning to America. For those who wish to view a nice little interactive slide presentation describing the basics of this disease, please see the link below and take the "Tour". Also, don't forget to donate !

http://www.alz.org/alzheimers_disease_4719.asp
This user has chosen to opt out of the Badges program
photo
08:21 PM on 05/13/2009
They do it all the time ... they are called clinical trials and Phase I is soley designed to adress drug safety safety. Phases II and III also monitor drug safety and also check for efficacy, usually versus an existing drug.
photo
cornelison
College grad. Life-long liberal.
11:56 PM on 05/09/2009
This disease has kept me wondering if there really is a heaven. If there is a heaven, what part of us is there? The part before this disease or the part after? This illness is a reminder of how fragile our minds are.
11:35 PM on 05/09/2009
Thank you Maria! This is truly one of the very worst diseases and gets so littlle attention. My sister just died - it was a slow death of 6 years and her children suffered terribly. Complete lack of dignity for the sufferer which breaks your heart. Keep pushing and speaking out for more research everyone!
09:22 PM on 05/09/2009
What about the environmental causes of Alzheimer's disease? Two articles state, "Aluminum has been shown to be associated both with plaques and with tangles in the brains of people with Alzheimer's disease (Crapper et al 1976). "Evidence for the selective accumulation of *aluminum* within the neurofibrillary tangle-bearing neurons was obtained in all 10 subjects with Alzheimer's disease." [1991]

However, for some reason, these findings were never studied for a cure. Instead, the Alzheimer industry is focusing on genetic manipulation, 'transgenic' animal models, and genetically changing humans, and the income derived from that.

Why not reduce aluminum intake and research ways to remove it from those who have too much of it. Perhaps it would cost some industries money?
06:41 PM on 05/09/2009
Post 2 of 2 continuing from 1 of 2
Well why is that? In recent years, studies have shown that curcumins antioxidant and anti-inflammatory properties may be powerful enough to break up the amyloid plaques in the brain that contribute to Alzheimers disease. Well people from India love curry. And the majority of turmeric is curcumin. Curry gets its scent and yellow color from turmeric. To figuratively say, the rate of Indians who do not like to eat curry may be the same as the rate of Indians diagnosed with Alzheimer's. Alternative healing is powerful, because it protects against illness before its origin. Ever since I learned about this, I have my father consume a certain daily diet. Gradual results are starting to show; however, nothing has been scientifically proven. I would like to share more, but I need to make more time later. P.S. I just finished watching your Project. You have my deepest appreciation. -David
06:40 PM on 05/09/2009
My father is 93 years old as well. While old age is affecting him physically, my half-brothers, half-sisters and I are having a growing concern for his memory and cognitive function. Thank you for sharing on this national epidemic with such personal insight, yet very professional in addressing this awareness. I am a strong believer in natural healing and alternative medicine. I believe that modern medicine is great for fixing illness; whereas, natural healing focuses on preventive health. We can eat and put things into our body that can harm us, so it is better to be aware of those causes and replace them with more helpful and useful remedies. Why not eat those things that prevent illnesses that are also extremely delicious. I think if we can educate the public more about these remedies and alternatives, we can definitely see a gradual decline in epidemics. Maria, do you know which country has the lowest rate of Alzheimer's? India. India has a population of about 1.2 billion, four times as much as the US population. Yet they only have 3% of the US Alzheimer's rate. post 1 of 2 continues...
10:35 PM on 05/10/2009
How long is the average lifespan in India?