One of the common issues that arise with a diagnosis of Alzheimer’s disease is denial, which often translates into families putting off end of life discussions.  Given that the symptoms of dementia don’t allow a person to reason or make decisions about their care, if advanced directives aren’t in place, a guardian is appointed.  The process of obtaining guardianship is lengthy and costly.  In Oregon, for example, it costs around $3,000 to $4,000.  Here’s the kicker though, each state has individual laws regarding guardianship.  Which in our neck of the woods, means that if someone living in Portland obtains guardianship and moves just across the state line to Vancouver, they have to re-apply for guardianship in Washington State and spend an additional $3,000 to $4,000. 

Crazy right?  Not to mention the fact that caregivers are under constant financial and emotional stress.  There are a number of other scenarios where the lack of uniform guardianship law comes into play for people with Alzheimer’s.  That’s why the Alzheimer’s Association is throwing support behind this Act, which was also just introduced in Washington.  If you want to take a peek at the proposed legislation for Oregon State click here. 

This is just one of many public policy issues that can directly improve the quality of life for persons with Alzheimer’s and their care partners.  If you want to help give voice to issues like guardianship, sign on to become an advocate for the cause.  I’ll keep you posted on where this goes in Oregon.

I rarely get nervous when speaking, but there was a moment before I went on stage yesterday when I thought, “why did I agree to speak today?”  That thought quickly disappeared as I looked out in the audience and realized we were all there for the same cause.  

The Alzheimer’s Association is crunching numbers this week, so I’ll post later on how much money we raised.  In the meantime here are some pics of Team Dyer.

For 18 years the Eggen Family hits the links in remembrance of their father, Ed Eggen, and as a benefit for the Alzheimer’s Association.  Ed Eggen was an attorney and founding member of the Portland Exchange Club.  After his death from Alzheimer’s disease in 1990, his family with the help of the Exchange Club, established a golf tournament in his honor.  

I was invited to attend and speak at the event last night.  It was a magnificent September evening with a slight breeze and lingering sunset.  It was heartening to see that 18 years later the event is still going strong.  Libations and laughter flowed as memories of Ed were shared.  Friends and colleagues have returned each year to spend an afternoon in the sun and help raise funds for Alzheimer’s research.  I gladly accepted their check on behalf of the Alzheimer’s Association and I’m personally thankful I was able to witness an ongoing tribute under a light pink September sky.

What I realized after I spoke last week, was that I’m beginning to develop distance from my story.  There are moments when I almost have to pinch myself.  Moments when I wonder, did this actually happen to me?  These moments are such gifts.  Distance is a good thing.  If you’d asked me a few years back I would have I would have said my story of loss was etched in my skin.  It’s not any longer.  It flows somewhere under the surface these days.  I like it better there.

Speaking of the Memory Walk kickoff party, it’s time to join Team Dyer!  The walk is a little less than two months away, and I’m kicking my fundraising efforts into high gear.  Click here to visit our team site.  You can join us for the walk on September 28th, find a walk near you, or make a donation.  It’s instant karma!        

Proceed with caution, as additional clinical trials will be required.  Also this drug, like others currently on the market, treats the symptoms of the disease not the disease itself.  Regardless, I love hearing about and sharing any potential breakthroughs.

One of the major issues in Alzheimer’s care today is training and the lack of it for caregivers.  The Virtual Dementia Tour is an innovative simulation of what it feels like to function with dementia.

One quick side note here, when I speak I’m often asked what’s the difference between dementia and Alzheimer’s?  The general perception seems to be that dementia is a better diagnosis than Alzheimer’s.  Not the case.  Dementia is an impairment in memory that inhibits a person from completing daily tasks.  Alzheimer’s is a common cause of dementia.  There can be other medical causes for dementia including: strokes, severe depression, and head injuries.  Another way to think of it is that dementia is the symptoms of Alzheimer’s.

Back to the Virtual Dementia Tour–in the tour caregivers, family members, and medical staff are outfitted with foggy spotted goggles and headphones that play constant background noise.  Then their shoes are filled with un-popped popcorn.  Gloves with un-popped popcorn on the fingertips are placed on their hands, and three fingers are taped together.  Now the true test begins, participants are asked to perform basic tasks, like finding a tie in a dimly lit room.  As you can imagine this simple task becomes nearly impossible to complete and creates instant empathy for the experience of dementia.  If you’d like to learn more about the video click here.  With the staggering number of baby boomers developing the disease, I hope this tour becomes mandatory in caregiver training.

Here’s the quick recap:  When my mom was diagnosed with early onset Alzheimer’s in her mid-fifties her insurance company deemed her condition pre-existing (there’s a separate back story on this which I’ll leave for a later post) and refused coverage.  Since she was under the age of 65 she had no access to Medicare even though she spent her career paying into the system.  My dad was forced to cash out big chunks of their retirement, pay-down their assets, and legally separate from her in order to make her eligible for Medicaid.  Losing a loved one to Alzheimer’s is difficult enough without the constant worry over paying for care and the gut-wrenching process of legal separation.  My father paid for my mother’s care out of pocket.  She died before any government assistance kicked in.  And the scary thing is, they were lucky.  They had savings and retirement money.  

The Ending the Medicare Disability Waiting Period Act of 2007 is one of the national priorities for the Alzheimer’s Association.  This bill would phase out Medicare’s two-year waiting period so individuals under the age of 65 with Alzheimer’s are eligible for Medicare immediately after they receive their determination of disability. 

Here’s my first call to action-ask your congressional representatives to sign-on to the bill.  What I learned in DC is that there’s little chance that this bill (or any others for that matter) will move this legislative session.  Congress is in a holding pattern with the presidential election looming.  The goal is to keep this issue in the forefront for 2009.  Click here to find your congressional representatives.  Take five minutes, shoot them an email, and tell them you want their support on this issue. 

FYI in the state of Washington Senator Cantwell and Representative McDermott have signed-on to the bill.  Senator Murray (pictured with me above) hasn’t yet, but I’m anticipating an email any day with her support!