HealthBridge's In-Home Care Blog

When did you begin to suspect your loved one might have a memory issue?

Twenty years ago, I started to suspect my grandma’s memory was slipping when she began retelling the same stories.  I know we're all a little guilty of repeating our favorite stories, but this was, well, different.

Was this a normal part of aging or something else?  

I didn't know it then, but my grandma had Alzheimer's Disease.

As I began to research how my grandma’s mind was changing, I was startled to discovery how difficult it was to find current, reliable information.  I knew there was research happening, but I didn’t know where to find it.  

To consolidate that information and make it accessible to busy caregivers, the Alzheimer’s Association has created a new website called the Alzheimer’s Association Research Center.  

The site acts as a filter, pulling in news and research and presenting it in a way that’s useful to the busy caregiver.  Here’s a little bit from the Association on how and why it developed the site:

"As I travel the country and talk to people whose families are affected by Alzheimer's disease, and as I read my daily e-mails, it is strikingly apparent that a wide range of people are genuinely interested in learning about what's happening in Alzheimer's science and when the next breakthroughs are going to come," said Angela Geiger, Chief Strategy Officer at the Alzheimer's Association. "The Alzheimer's Association is exploring innovative ways to advance research and also to engage and educate all kinds of people. This new website is an extension of this ever-expanding effort."

The innovative website seamlessly combines rich visuals with easy-to-understand content on a broad array of topics including:

• What Alzheimer's is, and how the disease progresses.
• Advances in treatments, diagnosis and prevention.
• How to volunteer for Alzheimer's clinical trials.
• Updates on key local, national and global research initiatives.

Important concepts about Alzheimer's the disease are explained and illustrated. Leading scientists are profiled. All of this and more is found at the "Research Center" in an easy-to-navigate presentation that enables users to quickly discover and connect with the information that matters most to them. Regular updates will include new information, interviews, graphics, and videos.

"Research is the most critical aspect of solving the Alzheimer crisis. This is why it is vital to have a place where people can go to find out about the latest Alzheimer research," Geiger said. "We listened to our constituents who said they wanted to know, learn and understand more. We hope this site serves as a catalyst for deeper understanding about Alzheimer research and a long-term dialogue with the public that encourages hope and engages them in the Alzheimer's cause."

Thanks to the Alzheimer's Association for creating this resource.  I know my family and our clients will use it often. 

How do you know if your loved one has Alzheimer's Disease?

Right now, you don't.  At least not definitively.  

You can have a pretty good idea based on a battery of clinical tests that allow you to eliminate other alternatives. But, even the smartest doctors at the best medical centers are often wrong. 

Twenty percent of people with dementia who received a diagnosis of Alzheimer's Disease did not have it.  Half of people with mild cognitive impairment were misdiagnosed with Alzheimer's.  

The only definitive way to diagnose Alzheimer's Disease is through an autopsy.  

Why is Alzheimer's Disease so hard to diagnose? 

A person with memory loss doesn't necessarily have Alzheimer's Disease.

Alzheimer's Disease is plaque in the brain plus memory loss and mental decline.  Doctors can't see the plaque in the brain without an autopsy.  They have to rely on other tests to make their best guess at the diagnosis.  

Not being able to see the plaque in living patients presents two big problems: 

1. It means doctors can't tell if the disease is progressing in your loved one.
2. Doctors can't tell if people with plaque, but normal memories, are developing Alzheimer's Disease. 
   

An accurate diagnosis, at last.  

Finding a trustworthy diagnosis for Alzheimer's Disease is the mission of Dr. Daniel Skovronsky and his team at Avid Radiopharmaceuticals.  

Avid discovered a dye that, combined with a brain scan, shows the hallmark plaque collecting in the brains of people with Alzheimer's Disease.  

The dye and scan are still being tested, but the preliminary findings are astounding, according to the New York Times.

A man diagnosed with Alzheimer's and cancer had a scan showing no plaque.  His autopsy did not show it either.  The diagnosis was wrong.  Another man with Parkinson's disease and dementia had been diagnosed as having dementia solely due to Parkinson's.  His scan showed amyloid.  So did the autopsy.  He had Alzheimer's.  A woman with mild memory loss had a scan showing no amyloid.  Her autopsy also found none.  Three others had clinical diagnoses of Alzheimer's, confirmed by scans and autopsies.  

This means doctors will, for the first time, have a reliable way to diagnose the presence of Alzheimer's Disease in patients with memory problems.  And people with a small build up of plaque, but no memory impairment, can immediately begin treatment to stave off the disease. 

The findings must still be approved by the Food and Drug Administration.  But, if they hold up, we will finally have a trustworthy way to diagnose Alzheimer's Disease.  

How will your life as an Alzheimer's caregiver change, if this accurate diagnosis method comes to pass?  

We're all frightened of losing ourselves to Alzheimer's Disease.  Watching our mind slip away while our body still has vigor is a terrifying idea.  

Now, the disease has a new wrinkle that, if you can imagine, makes it even scarier.  

The $20,000,000,000,000 cost.  

While we struggle through the worst financial crisis since the Great Depression, we're forced to acknowledge that caring for our loved ones with Alzheimer's Disease will completely disrupt our economy.  

We knew this impending neurological epidemic was huge, but until this new study by the Alzheimer's Association, we didn't know it was thirteen-zeros-huge.  Click here to download the full report. 

What, exactly, does this mean?

• By the year 2050, 13.5 million people will have Alzheimer's Disease.  That's compared to roughly 5.1 million who have it today.  
• The annual costs of care would also increase from $172 billion to more than $1 trillion.
• Medicare costs will rise by more than 600% and Medicaid costs will soar to $178 billion, up from the current $34 billion. 

What can we do about it?

There is not a cure for Alzheimer's Disease.  Wonderful and worthwhile organizations like the Alzheimer's Association are working for a cure.  They focus on two avenues:

1. Delaying onset of the disease.  A lot of encouraging research shows that we can personally help prevent the disease.  Living a healthy life, exercising and eating a Mediterranean diet can all help.  A breakthrough that delayed the onset of Alzheimer's Disease would reduce the number of people with the disease.  Needless to say, we want this.  
2. Slowing the progression of the disease.  Living with the early stages of the disease is life changing, but can be bearable.  Bill Bridgwater showed us a few weeks ago that "Alzheimer's Disease is something people have, not who they are."  Slowing the progression of the disease would increase the number of people with Alzheimer's Disease, but would improve the life of everyone afflicted.  

Here at HealthBridge, our purpose is simple:  to help people care for each other.  We believe finding a cure for Alzheimer's Disease is consistent with our purpose.  

In a couple of weeks, we'll announce the details of our plan to support the search for a cure for Alzheimer's Disease.  Until then, would you send me your ideas?  Please leave a comment below or send me an email to matt (at) myhealthbridge dot com (spelled out to avoid the spam-bots).  

P.S:  The costs above don't include the unpaid care provided by family members and friends.  In 2009, that cost was estimated to be $144 billion.  Whoa.