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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Facts & Figures

Did you know….

18 Wednesday Mar 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Cure Alzheimer's Fund, Facts & Figures, Helpful Resources, Round Up, Tips, USAgainstAlzheimer's

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alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

 
 
 
 
 
 

  • An estimated 200,000 of the 5 million Americans living with Alzheimer’s are under the age of 65. Many are in their 40s and 50s.
  • When you donate to the Cure Alzheimer’s Fund, 100 percent of funds of your gift goes directly to research. The organization’s founders cover all overhead expenses.
  • Women are at the epicenter of the Alzheimer’s epidemic, which is why Maria Shriver recently announced her new initiative, Wipe Out Alzheimer’s (in partnership with the Alzheimer’s Association).
  • The Longest Day is June 21st and it’s not too early to start planning a dawn to dusk activity to honor your loved one and raise Alzheimer’s awareness!
  • A comprehensive list of helpful resources is just a click away!  -> Resources
  • USAgainstAlzheimer’s makes being an advocate a piece of cake by providing EASY actions you can take to make a real difference. Sign up at http://www.usagainstalzheimers.org
  • The Alzheimer’s Association publishes a comprehensive Facts & Figures Report annually. Check it out to learn more.
  • You can call the U.S. Capitol switchboard to make your voice heard! Simply dial 202-224-3121 and ask for your member of Congress and/or Senators. For each office, give your name, explain that you’re a constituent and an Alzheimer’s advocate, and ask to speak with the Health Legislative Assistant. If that person is not available, ask to leave a message. Share your personal story and explain why you feel it’s critical that they support increased funding for Alzheimer’s.
  • The Long and Winding Road is also on Facebook! Stop by our page for your daily dose of inspiration and information!

 

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Alzheimer’s: When Will the Government Put Their Money Where Their Mouth Is?

03 Tuesday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Face of Alzheimer's, Facts & Figures, Helpful Resources, Life After Caregiving, NAPA, Research, Ruminations, USAgainstAlzheimer's, Washington

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alzheimers, Alzheimers advocacy, alzheimers funding, alzheimers research, dementia

 


In recent days, staunch supporters including Senators Susan Collins (ME), Edward Markey (MA), Amy Klobuchar (MN), and Jerry Moran (KS) have encouraged President Obama to include an increase for Alzheimer’s research in his FY 2016 budget. After all, what’s a “plan” to end Alzheimer’s by 2025 without the funding necessary to do so?

And the Verdict is in

Disappointment ensued as the Obama Administration released the proposed budget yesterday, and Alzheimer’s was overlooked. In a press release, George Vradenburg, co-founder of USAgainstAlzheimer’s said, “If we as a nation do not make Alzheimer’s research a top priority, we simply cannot meet our national goal of preventing and treating Alzheimer’s by 2025.”

What will it take to convince our government that unless we do something to stop it, Alzheimer’s will be the public health crisis of our lifetime? Perhaps the powers-that-be need to listen carefully to Michael Auslin’s story, or that of Karen Garner, whose husband was diagnosed before his 50th birthday. What about Rebecca Emily Darling, who was just 26-years-old when her mother was diagnosed?

Proof in the Numbers

  • Alzheimer’s is the only cause of death among the top 10 in America that cannot be prevented, cured, or even slowed. More than 500,000 people die annually from Alzheimer’s.
  • Deaths from Alzheimer’s increased 68 percent between 2000 and 2010, while deaths from other major diseases decreased.
  • More than 5 million Americans are living with some form of dementia. If we remain on the current trajectory, that number will rise to 16 million by 2050.
  • Every 67 seconds, someone in the U.S. develops Alzheimer’s. By 2050, it will be every 33 seconds.
  • In 2014, the direct costs to American society of caring for those with Alzheimer’s totaled over $200 billion, including $150 billion in costs to Medicare and Medicaid.
  • Unless something is done to stop it, Alzheimer’s will cost an estimated $1.2 trillion (in today’s dollars) in 2050. Costs to Medicare and Medicaid will increase nearly 500 percent.

For more information, check out the Alzheimer’s Association’s 2014 Facts and Figures report.

Take Action

Consider this: Alzheimer’s research spending currently stands at less than 1% of the cost of care.

Please write or call your Senate and Congressional representatives. Ask them to support the fight to #ENDALZ.

If not now, when?

It’s been said there are two kinds of people: those who have been personally touched by Alzheimer’s and those who will be.

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Five Helpful Tips for Caregivers

12 Wednesday Nov 2014

Posted by Ann Napoletan in Caregivers, Facts & Figures, Helpful Resources, November-National ALZ Awareness Month, Support system, Tips

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alzheimers, alzheimers caregiving, caregivers, caregiving, dementia, national family caregivers month

November is National Family Caregivers Month, an opportunity to focus on the challenges and needs of the more than 60 million Americans caring for family members across our country. As the population ages, so does the demand for caregivers. Consider this:  In 2013, over 15 million caregivers provided an estimated 17.7 billion hours of unpaid care for loved ones living with Alzheimer’s or another form of dementia. Those numbers are astounding, and they’re on the rise.

The natural tendency is to think of a caregiver as someone who cares for a loved one at home on a 24×7 basis; however, the role takes on many forms. Are you working full time and looking after a parent who still lives independently? Are you still raising children while simultaneously handling household tasks for your mother who is in the early stages of dementia? Do you oversee the care your spouse or parent is receiving in an assisted living or skilled nursing facility? These are all examples of the modern day caregiver.

If you or someone you know is a member of this ever growing demographic, I hope you’ll read on as I share five important tips to help caregivers achieve the balance and peace they dream of.

Accept help. Although most caregivers are stressed out, burned out, and worn out, they often have a difficult time asking for and accepting the help they desperately need. While doing some research in 2013, I came across the Lotsa Helping Hands website and it remains at the top of my list of recommendations. This powerful tool is free and provides caregivers with a central location to post tasks with which they could use help. Many times, family members and friends want to help, but just don’t know how – Lotsa Helping Hands solves that problem. Visit the website to find out more about how it works.

Consider some form of respite care. Simply put, you need a break. It doesn’t have to be a week in the Bahamas (although that would be nice), but scheduling an hour or two to go shopping, take a long walk, meet a friend for coffee, or just read a book can do wonders for the psyche in those moments where you feel ready to throw in the towel. To learn more about respite care, visit the ARCH National Respite Network or the Eldercare Locator website.

Find a support network. I can’t stress enough just how important this is. While friends will do their best to understand what you’re going through, nothing can replace connecting with another human being who has walked in your shoes. Contact your local Alzheimer’s Association chapter or Office on Aging for a list of available support groups. If schedules or lack of respite care prevent you from attending in person meetings, there are plenty of wonderful online options including the USAgainstAlzheimer’s, Memory People, and Alzheimer’s & Dementia Caregivers groups on Facebook, the Caregiver Action Network forum, and the Alzheimer’s Association’s ALZConnected online group.

Get organized! Check out technology designed to help caregivers stay organized; one of my favorites is a smartphone app called Carezone. If you aren’t tech-savvy, at a minimum, make sure important documents are in a safe place, preferably filed together in a folder or binder. Better yet, create a binder containing all pertinent information and documents from advance directives to a current medication list, insurance information, list of contacts, and medical history. There’s peace of mind in simply knowing that when you need something quickly, you know just where to find it.

Be gentle with yourself. We are our own worst critics, and caregivers are particularly susceptible to unhealthy self talk. Pay attention to your thoughts for a day and you’ll be surprised at how much time you spend beating yourself up. I recommend the book The Four Agreements, by don Miguel Ruiz, to all caregivers. The simple lessons found in these pages will increase your self awareness and help you manage guilt, stress, and expectations – both self imposed and those of others.

Please leave a comment if you have a tip to share with other caregivers. In the words of Charles Dickens, “No one is useless in this world who lightens the burdens of another.” 

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Marilyn, BA (before Alzheimer's)

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