Advocacy

22 Saturday Dec 2012

Posted by Ann Napoletan in Caregivers, Events, Facts & Figures, Helpful Resources, NAPA, Research, Washington

actionalz-logo2 Having been through this experience, and now having lost my mom, I feel more compelled than ever to advocate, ADVOCATE, A-D-V-O-C-A-T-E!! Those of us who have suffered the wrath of Alzheimer’s or related dementias owe it to those who come after us to do what we can to advance the Alzheimer’s agenda in this country.

The Ohio Council of the Alzheimer’s Association is made up of the seven Association Chapters in the State of Ohio and exists to advance Alzheimer’s initiatives at the state and federal levels. The Council’s web page is a great source of information regarding upcoming events as well as a list of state and federal public policy priorities.

Are you educated on our government’s plans and priorities concerning Alzheimer’s and related dementia? There’s a lot going on, and our support is needed!

The (Ohio) Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (H.B. 27), passed December 20, 2012. This bill will simplify and standardize the process of obtaining guardianship across state lines, which is critical for families who are in crisis but do not have advanced directives in place.

(Ohio) Alzheimer’s Respite Programs and Services (Budget Line Item 490-414) provide funding for respite care, which can be a true lifesaver for full time caregivers.

The National Alzheimer’s Plan, unanimously signed into law in January, 2011, aims to enhance quality of care, expand support services for those suffering from the disease and their families, increase awareness, improve analytics, and most importantly “prevent and effectively treat Alzheimer’s disease by 2025.” This is an ambitious agenda, but one that we must push forward.

The Alzheimer’s Breakthrough Act (H.R. 1897), if passed, will make Alzheimer’s research a priority for the National Institutes of Health. Did you know that for every $28,000 the federal government spends on care for Alzheimer’s disease patients, it only spends $100 on Alzheimer’s disease research.

Consider this: If there were a treatment that would delay the onset of the disease by just five years, it would reduce government spending on Alzheimer’s care by nearly 50%. Without a viable treatment, over the next forty years the estimated cost for care in America is $20 trillion, including $15 trillion to Medicare and Medicaid. Sound like this needs to be a priority??

The HOPE for Alzheimer’s Act (S. 738/ H.R. 1386), if passed, will provide for early diagnosis and access to care planning services leading to better outcomes for individuals with Alzheimer’s disease and their caregivers.

September: World Alzheimer’s Month

31 Friday Aug 2012

Posted by Ann Napoletan in Facts & Figures, Washington, World ALZ Month

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September is World Alzheimer’s Month, and it gives all of us a wonderful opportunity to spread the word, educate the masses, and advocate, advocate, advocate! There are still plenty of people out there that think ALZ is “just being forgetful” or “a normal part of aging.” Neither could be further from the truth, but these are indeed very common misconceptions.

To be honest, until I began this journey with my mom, I didn’t realize the magnitude of the illness or the many ways in which it can manifest itself. It’s a slow, agonizing process that steals every last bit of dignity from its victims. And it causes us to mourn the loss of our loved ones over and over and over again. They’re physically present, but they are just the shell of the person they used to be. Each day, we lose a little more of them.

Click here to read the story of Jordan, diagnosed with early onset four years ago. The younger the victim, the more misconceptions and the greater the stigma.

Those are just a few of the human aspects of the disease. The facts and statistics are an entirely different topic. Consider these numbers:

5.4 million people have Alzheimer’s; projection for 2050, 14-16 million
The annual cost is $200 billion
ALZ is the 6th leading cause of death
There are an estimated 15 million unpaid caregivers
Every 69 seconds, someone in America develops Alzheimer’s
Two thirds of those with the disease are women
In 2011, Medicare & Medicaid spent $130 billion caring for people with ALZ; projection for 2050, $805 billion

Those numbers are staggering. Every time I see them, I am blown away. 5.4 MILLION people with the disease. $130 BILLION spent in 2011. And that’s Medicare/Medicaid. Imagine the overall cost of private pay care. $75,000/year is probably about right for the Midwest. These people who worked hard for 30+ years are spending their pension, Social Security, and “nest egg” for care; not exactly how they thought retirement would look, is it?

This is why it’s so very important that people understand the severity of the problem and the exponential growth we’re looking at in the years to come. We must lobby. We must educate. We must eradicate Alzheimer’s.

The latest from our friends in Washington…

07 Tuesday Feb 2012

Posted by Ann Napoletan in NAPA, Petition, Research, Washington

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Exciting news from Washington! The National Institutes of Health announced today that an additional $50 million is being earmarked for Alzheimer’s and dementia research. This is part of the recently passed National Alzheimer’s Project Act, which calls for development of an effective treatment for the disease by 2025.

The thought of having viable treatments in place in as few as 13 years is mind boggling, and it truly offers hope to so many of us who are worried about what our own futures hold.

For more on today’s announcement, check out this article from CBS News.

If you’d like to do your part to let the President know that Alzheimer’s Disease can’t wait, click this link to sign the Petition For a Strong National Alzheimer’s Plan.

Until next time…Carpe diem…