“Every Minute Counts” Mike’s Hughbanks Reaction

“Every Minute Counts” was aired on PBS nationally Wednesday January 25 at 9:00 PM Central time. Debra and I were asked to be part of a panel at a prescreening in Omaha. What follows is what I took away from the documentary, sorry, I am a list maker, so first you will see my list of the points that resounded with me, and then a summary of my thoughts at the end.

 1.       Alzheimer’s disease is the biggest epidemic we have in this country.

2.       5 Million Americans are living with the disease.

3.       Epic disease with a case every single minute in this country and every 4 seconds around the world.

4.       One of the top six things that are going to kill us.

5.       It will sink the health care economy and national economy unless something changes.

6.       The disease will take us (country) down.

7.       6th leading cause of death in the US.

8.       No effective treatments and no way to prevent it.

9.       Individuals with the genetic mutation are guaranteed to get Alzheimer’s, probably before age 60.

10.   It is estimated by 2050, 14 million will be living with the disease in our country if nothing changes with a cost equivalent to our defense budget of 1 trillion dollars.

11.   500,000 people living in Florida live with Alzheimer’s.

12.   Long-term care in an Alzheimer’s Unit can easily exceed $ 5,000 a month.

13.   Neither Medicare nor Private Health Insurance pays for long-term care in a facility.

14.   Alzheimer’s is the most expensive disease in America exceeding heart disease and cancer.

15.   Alzheimer’s will be the financial sinkhole of the 21st century.

16.   1 in 5 Medicare dollars right now go to someone with Alzheimer’s, it is projected this will soon be 1 in 3.

17.   “Granny-Dumping” is becoming prevalent. Caregivers need a break so they take their demented family member to the ER. It is classified as a “Social Admit” so Medicare does not pay.

18.   Medicaid is a federal program but is administered by each state. The wait in Florida for Medicaid to assist with long-term care can take up to 5 years. You are place on “The List”.

19.   New Hampshire’s median age is even higher than Florida, partially because the younger people s are exiting the state. Alzheimer’s is epidemic in New Hampshire. In 1996 the State of New Hampshire put a policy in place to stop the addition of nursing home beds with the intent of limiting the state’s Medicaid spending.

20.   Of the top 10 diseases, (how people die), Alzheimer’s is the only one where there are no survivors.

21.   Most people with Alzheimer’s are not able to lobby or even discuss their diagnosis due to the nature of the disease.

 

Some of the experts that were featured in the documentary;

Dr. Rudolph Tanzi, Harvard Medical School.

Mathew Baumgart, Alzheimer’s Association

Dr. Stephen J. Bartels, The Dartmouth Institute.

Senator Edward J. Markey

Dr. Beau Ances, Washington University School of Medicine.

My first reaction to the documentary was sadness for the real life examples of people living with the disease. Honestly, the facts and numbers were mostly known to me because I speak about Alzheimer’s and this information is out there already for the public to see. Debra posted her reaction previously and I will say it affected her very deeply. I can see now that when she sees people in the later stages of the disease as represented in the documentary, she superimposes my face on them knowing that this disease is a death sentence for me.

After time to process the documentary, I started to feel a little angry. It depicts people living with the disease in later stages. I felt it was not doing justice to those of us who have the disease in the Early Stage and it is progressing more slowly. I checked my email to find that others felt the same way. A high school classmate asked me if I required full time care or was in a nursing home yet, everyone with Alzheimer’s is supposed to be unable to care for him or herself.  I now realize that the purpose of the documentary was to make the public aware of how horrible this disease really is. They had to have something of a shock value to the program.

There are forms of dementia that are very aggressive.  I live in the minority because of my age, I am part of the 200,000 Americans diagnosed under the age of 65. I am also in the minority in that I am a white male. People of African and Hispanic descent are at higher risk as are women. Because I am an insured white male, I was diagnosed early. That is not always the case, which is a travesty. It really is a matter of social justice. I think of the groups that I speak to and am quickly realizing that well over 95% are white. Who is reaching the minority populations that are actually at greater risk? I have been speaking to predetermined groups, a lot of them are dementia support groups with very minimal attendance by minorities.  We can and need to do better. Every American deserves quality medical care and support.

Where do I go from here? I am using the documentary as a springboard. They made the comment in the program that most people with Alzheimer’s cannot speak for themselves. I feel the overwhelming responsibility to speak not only for myself, but also for those who cannot speak for themselves.

What can you do? Find out who your legislators are for your respective state and district, write them and call them. We need continued increases in funding if we really want to figure this disease out. Before I was diagnosed, I had no idea what the prognosis was for someone diagnosed with Alzheimer’s disease.

I think the documentary was very well done. It is available to view on line on PBS. Please recommend it to others, like it on Facebook, and any other form of social media you use. Thank you to PBS and Home Instead. I had the privilege of speaking at Home Instead Headquarters in Omaha last year. They are passionate about elder care. The founders of Home Instead, the Hogan’s have an amazing story, very classy people and a quality organization.  

In conclusion, I feel I need to break my summary down into two issues. The first is public awareness, which this documentary addresses very well. It needed the shock value and therefore I think it was very beneficial. Many Americans have no idea what Alzheimer’s disease is and how it affects families.

The second issue is those living in the Early Stage and the importance of early detection. I remember visiting with Dr. Petersen when he was in Omaha from Mayo last year when he made the point that we should be concerned about early detection. I did not see representation in this documentary about the probable majority of people with Alzheimer’s that are symptomatic, maybe undiagnosed, and do not yet require institutional care or in-home care. Where is the platform for this discussion? We have millions of Americans living with some form of dementia that are not in care centers nor do they require full time in home care.

At times, I feel I am the only one on my soapbox doing the talking. If we create a platform for mid-late stage care, shouldn’t we also have a platform for early detection and early stage? The public and the agencies, especially the Alzheimer’s Association have to realize that some of us with a diagnosis of Early Stage Alzheimer’s do have a voice and we do want to be heard.

My name is Mike Hughbanks, I have Alzheimer’s Disease, I do not live in a care center, I do not require in home care. I am 60 years old living with my loving wife writing a blog about my life with Early Stage Alzheimer’s disease. I represent millions of Americans under 65 and over 65 that are in the Early Stage of this disease. We have a voice and need to be heard! Let’s continue the conversation, this PBS program was a good start, but it is only a start.

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