Saturday, August 6, 2011

Dear Alzheimer's Association Leadership

Some folks are getting more and more upset with the Alzheimer's Association. I am happy to give them as much publicity as I can. This is important because so many of us look to for information.

Dear Alzheimer's Association Leadership

Alzheimer's can grab hold of your mind early

There are loads of good Alzheimer blogs out there. I like this one from Salinas, CA.

From Home Care Monterey CA - Family In-Home Caregiving Blog - View from an (unnamed) private duty caregiver

With Medicare, Medi-Cal and Private Insurance all looking to slash costs, some are questioning whether it is worth the financial cost of testing for a disease if there is no cure for it. But what about the human cost if someone has disturbing symptoms and a Doctor doesn't want to test for a disease because there is no cure?

This is a disturbing moral dilemma that I am sure will be more and more common as more baby boomers retire and the cost of medical care continues to soar. The Monterey Herald highlighted this issue on the front page of the health section on Thursday, with a focus on the tragic Alzhiemer's disease.

"I don't remember if I had a bath," Barbara Lehser, only 54 years old, told the paper. "It took me two hours to follow a recipe. I drove to my childhood homestead the other week instead of my own home. It's really scary," she said. Her Doctors and many others are arguing over whether to test her for Alzheimer's disease.

The debate was in high gear at the Alzheimer's Association International Conference held in Paris France last week (July 2011), where research on new methods such as easier brain scans, an eye test and a blood test made it clear there will be more tools for Alzheimer's diagnosis in the future.

Current drugs only treat Alzheimer's disease symptoms. They only work on half of the people they are prescribed to, and they only last for one year on average. Some argue against diagnosing and treating Alzheimer's victims. There is no data "to show that knowing makes any difference in outcomes. Until we do, this is going to be a tough sell," Dr. Kenneth Rockwood of Dalhousie University told the paper.

As regular readers of my blog know, I am an avid supporter of the Alzheimer's Association, a great group of people who help the families of those suffering from Alzheimer's disease. They are also the largest private funder of Alzheimer's research in the United States and have been involved in every major discovery over the past three decades. Having cared for my grandmother for more than five years before she passed away in January, I can tell you that there is nothing more terrifying than losing your mind and not knowing why. I completely disagree with Dr. Rockwood and anyone else who is in support of letting sleeping dogs lie.

If someone is losing their memory, or in the case of Ms. Lehser, driving back to a childhood residence instead of going home, they want to know why. Although the research studies indicate that treatments for Alzheimer's disease are only 50% successful and last only a year, on average, averages can be deceiving. We went through myriad medications for Nana, and have done the same for numerous Clients of Family inHome Caregiving with Alzheimer's and dementia. Some work, some don't. Everyone has different body chemistry. But having even one day with a loved one who is disappearing before your eyes is better than nothing. I wouldn't give up any of those lucid moments with my grandmother for any amount of money.

I once worked as a temporary employee for an HMO and at their weekly staff meeting they were talking openly about how they wished a prematurely born baby would die. The ICU care was just killing their budget and their bonuses were going to suffer. I walked off of the job in disgust. We can not make life and death or quality of life decisions based on money, it is not moral. Ms. Lehser's story is, thankfully, a rare one. Most people don't get Alzheimer's disease until they are in their senior years.

However, it is not unheard of.

In a village in Columbia, early onset Alzheimer's affects almost everyone. Their memories start failing in their 40's, sometimes as early as 32, and the average resident has full-blow Alzheimer's by the age of 47. Tragic as it is, the village is a great setting for a research study. Inbreeding and environment are two possible causes. Unfortunately the region is filled with drug traffickers and it's been difficult to get a full-blown research project done. However, it does show two things. One: Alzheimer's doesn't affect everyone, and there are likely cause and effects that can be discovered by studying populations like this; and, Two: the concept that Alzheimer's disease is an old person's disease that nothing can be done about because it is a function of age is a false one.