Just got in the door from this meeting and wanted to tell you about it before it all fades away. First, I'll tell you what we discussed and then I'm going to throw out some "Did You Know's".
Represented at today's meeting were the chapters in Atlanta, and via Skype, those in Columbus, Macon, Augusta, Dalton, Savannah and Tifton. Before things got underway, Kris Bakowski (previous blog interview here) talked to us. Kris is a member of the Atlanta Regional Board, and is on the steering committee of the Northeast GA walk in Athens. There was also a short address via tape by President Obama, during which he spoke of his signing of the National Alzheimer's Project Act (NAPA) this past January and also pledged his continued support in finding a cure. In short, the President acknowledged that NAPA is a good start, but there is much work yet to be done.
Today's session was moderated by Cory Thompson, Secretary of the Georgia Chapter and our format was that each one of us who wanted to address the gathering had 2 minutes to speak.
I know when I mention the major topics discussed by everyone who spoke, I'll be "preaching to the choir" with some of you, but for the rest, my hopes are once you see these subjects, that you not only use them as information, but also to become involved in your local chapter if you aren't already. This is an exciting time for all of us, and since we now have NAPA up and running, we need to discuss how to use it to our advantage. In other words, the foot's in the door, but we need to open that door further in order to follow through if we are to improve health outcomes and lower costs for all impacted by Alzheimer's Disease.
Here are the major topics discussed at today's meeting.
1. Caregivers: in 2010, there were half a million cargegivers nationwide, and you can bet that number has increased in 2011. That half million provided 5.5 million hours of care at an economic valued cost of 6.5 billion dollars - unpaid. Meaning they bore all the expense taking care of their loved one. One of the goals of NAPA is to provide funds to recompense/assist those cargegivers and take some of the financial burden off them. It bears mentioning that many of these folks are unemployed which creates even more of a hardship.
Under the heading of Caregivers, respite was discussed. Many caregivers don't get a break and are not only exhausted and depressed, but in poor health themselves - either already or as a result of being "spread too thin', especially if they happen to have a family which depends on them as well.
2. Education of the public and, most importantly, physicians. Much of the public still does not understand that Alzheimer's Disease is only one form of dementia and tend to group them all together and call it Alzheimer's. The truth is that each form of dementia is treated differently with different methods and medications.
In the case of physicians, many of them misdiagnose or fail to diagnose Alzheimer's at all. Those who do tend to send the patient home and tell them to come back in a year. Although this is slowly improving and AD is correctly diagnosed more than 90% of the time, as many as half of the 5.4 million Americans with Alzheimer's have never received a formal diagnosis.
3. Support Groups for those of us with Early Onset Alzheimer's: There currently is no organized support group, but this will be one of the priorities of our Atlanta chapter. There currently is an in-home counselling program which has been funded by a grant to our chapter. These are the visits you've read about here with my counsellor Suzette. And that's me with Suzette below.
4. Revamping of the Medicare system which currently requires a 2 year wait for anyone with a first-time diagnosis of dementia. This leaves those of us with Early Onset "out in the cold" if we happen not to be able to work.
There were more concerns discussed, but these were the ones which I considered major.
So you see we all have our work cut out for us, but there is light over the horizon if we all continue our efforts as advocates, caregivers and patients. With NAPA being signed we now have a voice, but it needs to be used. We could use you on the team. All you need to do is contact your local chapter and tel them you want to help. Even if you aren't impacted by dementia now, chances are you will be in the future.
Did You Know?
1. Up to now, we've been telling you Alzheimer's is diagnosed every 71 seconds. That just changed. It is now every 69 seconds. That may not be such a big change, but in 2050, it jumps to every 33 seconds.
2. It isn't always the younger family member taking care of the older one. Sometimes it's the other way around. In our group today, we met an 81 year old gentleman who takes care of his 56 year old daughter who was diagnosed when she was 52!!! Do you think he could use a little help, a little respite?
3. Between the years 2000 and 2008, the number of Americans who died from Alzheimer's increased 66%! This makes it the 6th leading cause of death, yet it receives the least amount of funding for research.
You've read about my lovely wife Dondra, but some of you have never "met" her, so here's she is with Suzette and me at today's meeting:
I'd like to end today's blog with a quote by Jim Williams, one of our senior advocates:
"Alzheimer's is the only disease which causes the death of your loved one twice. Once while they're still alive."
Please don't forget the homeless and unwanted animals and click to feed below the video: