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
Princess Yasmin Aga Khan

GET UPDATES FROM Princess Yasmin Aga Khan
 

Waking up to the Realities of Alzheimer's Disease

Posted: 10/21/10 02:31 AM ET

This week, First Lady of California Maria Shriver and the Alzheimer's Association released "The Shriver Report: A Woman's Nation Takes on Alzheimer's." As a friend of Maria's and a longtime Alzheimer advocate, I was proud to contribute an essay about my experiences with the disease to the report.

My mother, the actress Rita Hayworth, passed away in 1987 as a result of Alzheimer's disease. I'm all too aware of the devastation the disease leaves behind, its growing prevalence and the indisputable effect it has on families and our economy. But our nation as a whole seems to be blissfully unaware of the growing urgency of this problem. Why?

The only thing I can imagine is that we are afraid. And as women, as a nation, we can't afford to let our fear dictate ignorance. We must address Alzheimer's, how it will affect our lives and the lives of our children. We must address how we will care for the 10 million baby boomers who will develop the disease.

And it's women who are at the epicenter of the Alzheimer epidemic. The Alzheimer's Association Women and Alzheimer's Poll, unveiled for the first time in The Shriver Report, reveals that two-thirds of the people who have Alzheimer's -- 3.3 million -- are women. In addition, 60 percent of Alzheimer caregivers -- 6.7 million -- are also women.

It's time to harness the power and ability of women helping other women to start a dialogue around this disease. We've made great strides around treatment and prevention of other diseases, such as breast cancer, AIDS and heart disease. Why not Alzheimer's?

My own experience with the disease began when I was young girl. On visits home from boarding school, I would notice my mother's odd behavior. She would move her personal items from her bedroom to other closets around the house, including mine. She would throw all the food out of cupboards. She imagined that someone was trying to break into her home.

As the disease progressed, her confusion, disorientation and fear worsened. As her panic increased, my own helplessness and guilt became overwhelming. It was a terrible day when we stood together in front of a mirror, and she turned to me and asked, "Who are you?"

It wasn't until she had a complete breakdown that I could step in and take charge of my mother's life. I became her caregiver, and I worried about her all the time.

It was Maria Shiver's mother, Eunice Shriver, who first encouraged me to speak out about Alzheimer's disease. I was initially reluctant to share my painful personal experiences. She told me, "You can't let this disease continue to happen. You have to have the courage to make a difference."

I started working with the Alzheimer's Association in 1981. Together, we developed the Rita Hayworth Galas, a series of events held in major cities across the country to raise funds and awareness to fight Alzheimer's disease. On Tuesday, October 26 we'll host the 27th annual New York City Rita Hayworth Gala. This is my way of honoring my mother. This is my way of creating a dialogue.

The Shriver Report: A Woman's Nation Takes on Alzheimer's echoes other experiences like mine through personal essays and photographs that illuminate the effect of Alzheimer's on our nation. Contributors to the report include everyday Americans and well-known public figures, including Barbra Streisand, Terrell Owens, Soleil Moon Frye, ABC News Nightline anchor Terry Moran, CBS News Correspondent Barry Petersen, former First Lady Laura Bush, President Ronald Reagan's daughter Patti Davis, Alzheimer's Study Group Chairs Newt Gingrich and former Sen. Bob Kerrey, Secretary of Health and Human Services Kathleen Sebelius and Vice President Joseph Biden.

You can read their stories in the e-book version of the report. I wake up to the realities of Alzheimer's disease every morning. I wake up knowing my risk, and the risk that our nation's women face as a whole. Now I'm inviting other American women to wake up to the realities of Alzheimer's -- and to take action.

 
 
 
  • Comments
  • 11
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Favorites
Recency  | 
Popularity
09:31 PM on 11/01/2010
Read my article published today to understand why Alzheimer's disease is diagnosed much too late!http://www.americanchronicle.com/articles/view/195692
Susan Scanland MSN, CRNP, GNP-BC
CEO & Founder, Dementia Connection LLC
12:14 PM on 10/23/2010
Early diagnosis and intervention will be key to managing the increase in Alzheimer's and other forms of dementia. There are several paper-based tests that can provide a “first pass” screening for memory impairment: http://bit.ly/91Vb9K MyBrainTest.org
10:05 AM on 10/22/2010
Princess Yasmin Aga Khan, and other people affected by this horrible disease are doing amazing work. Whether you are in the public eye, or fighting the disease in the privacy of your own home --
we all should lend support to the research, and awareness campaigns of the Alzheimer's Assocation.
ThatsTheTheWayItIs
religion, ideology, partisanship are delusional
04:56 PM on 10/21/2010
CURCUMIN PREVENTS AD, it's the active ingredient of spice turmeric. I take daily capsule, recommend same, also prevents prostate cancer. Google "alzheimer curcumin prostate cancer" for more.

http://alz­heimer.neu­rology.ucl­a.edu/Curc­umin.html

Curcumin and Alzheimer’s Disease. Our group has tested curcumin in several models for Alzheimer’s and found that it not only reduces oxidative damage and inflammation (as expected), but also reduces amyloid accumulation and synaptic marker loss and promotes amyloid phagocytosis and clearance. Curcumin worked to prevent synaptic marker and cognitive deficits caused by amyloid peptide infusion and abeta oligomer toxicity in vitro.
standish
You're gonna need a bigger boat.
02:56 PM on 10/21/2010
I would like to weigh in here with this celebrity "caregiving" notion that really has me, a hands-on day to day caregiver for my elderly mother who has dementia, riled. Are wealthy celebrities like Maria Shriver and Yasmin Kahn caregivers in the traditional sense of the word, or are they care co-ordinators -- in other words, do they assign the day to day care of their mothers or fathers or loved ones to someone else -- the feeding, the changing of diapers, the changing of soiled bed linens, the washing of clothes, the housecleaning, the day to day exhausting work that thousands and thousands of caregivers like myself do on a daily basis for their beloved parents while still attempting to hold down jobs? Do you honestly think Maria Shriver rolls up her sleeves and does any of the backwrenching scut work that comes with caregiving? The answer is vitally important as the Alzlheimer's population in this country is going to shortly explode, and appearing before congress immaculately coifeed and dressed is not the day to day prosaic exhausting, emotionally draining experience most caregivers to Alzheimer's patients live through 24/7. I am not challenging the love and support these privileged women give to their parents, but I do have less patience with their very different experience of "caregiving" which, as I have said, is more akin to care coordinating, than the physically gruelling but lovingly rendered caregiving that most of us are doing for our families.
photo
HUFFPOST SUPER USER
ARTIST50
Vote Obama 2012
03:40 PM on 10/21/2010
My heart goes out to you, I have been where you are and there is nothing I can say to help you get through this difficult time. My mother passed away this year at age 91, and the last few years were the most stressful of my life, and yet I had it much easiler than some. You must get help, you can't do it all yourself. And I hope you can find a good friend that has been through this before so you can share your frustrations. Bless you.
standish
You're gonna need a bigger boat.
10:15 PM on 10/24/2010
Thank you for your kind words. I have never done anything so hard in my life, yet I have never done anything so rewarding in my life. To see my frail little mom shuffle into her own bed every night in her own home and sleep soundly and securely and wake up the next morning with a smile and a hug for me makes it all worthwhile. There are countless people like myself doing the same service and there will only be more in the future as our parents live into advanced old age. And I fear that we are not prepared for that eventual fact, as the Alzheimer/dementia population in this country multiplies exponentially. I have come to think of the aged as falling into three categories: age 65-75 are senior citizens; age 75-85 are the elderly; and age 85 up, like mom, are the advanced elderly. It is the last two categories that are going to present this country with a health crisis that it needs to prepare itself for immediately.
10:20 AM on 10/22/2010
What is the point of judging??
standish
You're gonna need a bigger boat.
10:15 PM on 10/24/2010
I am not judging. Surely you can see that.
02:55 PM on 10/21/2010
Thank you for speaking out about this. It's a special kind of grace to turn your private pain into motivation to help others.
This user has chosen to opt out of the Badges program
photo
bobncar
for the good of all, not just the chosen few
02:22 PM on 10/21/2010
Yesterday we received a phone call from our medical provider. They asked to speak to my husband. Since he is hard of hearing I asked if I could help them and was told that a short questionnaire was being conducted and would I be willing to participate in helping him get thru the questions. At first the questions were silly and annoying, and then we discovered there was a reason behind it. He was being screened for potential Alzheimer symptoms. What we thought as a silly interview became very important to both of us, as I was able to be tested along with him by being the interpreter. WE both passed without any hint of a problem but being up in years we have both worried that our occasional lapses in memory when it comes to misplacing something or forgetting some ones name might be portentous. Thank you Medicare for providing this screening. We are forever grateful and relieved