Boomer Bytes #58: Alzheimer’s Disease – While I Still Can

Published Tuesday, February 24, 2015 at 10:48 am

Editor’s Note: Below is another column in Steve Canipe’s series called Boomer Bytes. The column, as the title suggests, will focus on a variety of topics that may be of interest to baby boomers, those born between 1946 and 1964. But Canipe also hopes to start a conversation with younger generations, too. Check out an introduction and Canipe’s (first self-titled) column here.


Alzheimer’s Disease –While I Still Can

By Steve Canipe

Feb. 24, 2015. Did you know that in 2011, the first year the boomers starting turning 65, that there were 5.3 million people with this disease? This data point is from the Alzheimer Association (http://www.alz.org/boomers/).

Canipe

Canipe

So what is this thing that many people talk about and many people get? Is it contagious? Hereditary? Accidental? Exactly what? The purpose of this column will not be to answer those questions; although they are really good questions. The purpose will be to raise awareness of the disease and bring some light to bear on those with it and those who love and care for people with it. I will share a personal story of dealing with it and also stories from friends who love and care for folks with it. This column in particular was suggested by a reader from Georgia. She mentioned a book from which I took part of the title of this column…While I Still Can. I’ve not read the book yet but will order it from Amazon when a bug is fixed. (http://www.amazon.com/While-Still-Can-Rick-Phelps-ebook/dp/B00814DRRU) In the meantime, you can visit the website of the author, Rick Phelps, at http://whileistillcan.net/.

Mr. Phelps is himself a sufferer from this disease, and of the early onset variety (EOAD). He was diagnosed at age 57. The book and his social network called Memory People are designed to help people learn more about the disease and how families might better cope. He describes himself as a regular guy.

His is a poignant story of feeling an imperative to write and let others know of the disease and its effects on the individual as well as the family and friends. There is no timeline as to how rapidly the disease progresses. Some cases move very fast and others seem to linger for years with progressively debilitating effects. Phelps co-author, Gary Joseph LeBlanc, cared for his father who was a sufferer, for over 10 years.

The 2014 report from the Alzheimer’s Association noted that the annual cost for providing care would be in excess of $220 billion if the 17.7 billion hours were actually paid. It was listed as the sixth leading cause of death and there were nearly 15.5 million unpaid caregivers. The report further noted that among the 10 leading causes of death only Alzheimer’s had increased. More than 500 thousand seniors die each year from the disease.  It is the 6th leading cause of death in the United States and the 5th leading cause of death for those 65 and older.

Deaths from most other diseases including prostate and breast cancer as well as heart disease have been on the decline; but no decrease in Alzheimer’s deaths. From 2000-2010 there was a 68% increase in attributable deaths. Perhaps the decreases in the other diseases were caused by earlier and better diagnosis and by better treatment options being available. Until recently there were no really effective treatments. In December 2014 a group working at Stanford University School of Medicine announced what may be a breakthrough in treatment. (http://med.stanford.edu/news/all-news/2014/1) Without going into too much detail here, it is looking at a single molecule in a microglial cell. This is the frontline defense and if it can detect the presence of A-beta the progression can be stopped and even reversed. So far the research is in mice not humans but seems promising. There has already been evidence that the use of aspirin seems to retard the disease. The aspirin pathway is being explored for use in new drugs.

Last September (2014) the New Republic had an article entitled “We Are Entering the Age of Alzheimer’s” and opined that everyone will be touched directly or indirectly by the disease. The staggering statistics it notes are relevant as we live longer. To quote the article from the New Republic at http://www.newrepublic.com/article/119265/alzheimers-disease-statistics-show-illness-will-define-our-times “Alzheimer’s disease is practically unheard of in adults younger than 40, and very rare (one in 2,500) for those under 60. It affects 1 percent of 65-year-olds, 2 percent of 68-year-olds, 3 percent of 70-year-olds. After that, the odds start multiplying. The likelihood of your developing Alzheimer’s more or less doubles every five years past 65. Should you make it to 85, you will have, roughly, a fifty-fifty shot at remaining sane.”

Did you see those ages? They are us – in spades they are us. You might say that 85 seems like ages away. Even for the oldest of us Boomers that is 16 years away…so can we be be complacent and take the attitude of “don’t worry, be happy”? We might except that by 2030, when we are at the threshold of 85, the number of people suffering from Alzheimer’s and other dementias is expected to hit 76 million. By 2050, when all but a few of the oldest boomers will be gone, the number of cases will be at 135 million.(We would be 104.)

Some of the readers of this column will have already experienced being a caregiver or perhaps a few have EOAD like Mr. Phelps. In my case, it was not my parents but my mother-in-law who had the disease. Since all cases are individual, there may be nothing similar to any other case in her story. But in addition to my mother-in-law, her only sister, who was younger, also developed the disease at about the same age.

As you might guess, my wife was concerned and becomes more so as she approaches that age of 77. Her doctor has assured her that these more typical onsets (age-based) are not hereditary but just chance occurrences. There does seem to be some greater instances of genetic involvement with the early onset variety.

Experiences with my mother-in-law ranged from funny to sad as she seemed to slip in and out of knowing. There was one instance when I had picked her up after a meeting in Raleigh and she was coming to spend the Thanksgiving holiday with us. We were talking about things and she brought up a person and a job she had many years earlier. I have to think that to her it seemed like yesterday since her memories seemed so vivid. Finally she asked me something about the situation and I had to tell her that I did not know this individual about whom she was speaking. She said to me “Sure you remember this.” I asked when it had happened and she gave me a date in the early 1940s. It was sort of funny since this was before I was even born. Since my wife and I grew up on opposite ends of North Carolina, I would probably not have known the person or situation anyway.

She stayed in a memory unit at a care facility in Raleigh and my wife visited at least once per week. It was sad that my mother-in-law would say to my wife that her son (Sharon’s brother) never came to see her. This was not true since he visited regularly but the memory of his visit just went away. When the visit was occurring it was there, but when the moment passed the visit memory did as well.

In the end it was not Alzheimer’s that caused her to pass away but a massive stroke. When a loved one dies it is hard but in some cases it seems almost like a blessing. One pundit asked about this situation noted that in his case his father had died several years before but the body that once housed that person had ceased to function. Anyone who has lived with this debilitating disease can understand his sentiments.

How can you tell if someone you love and care for has it? Unfortunately there is not an absolutely easy way. The Alzheimer’s Association has a list of 10 potential trouble spots, but a doctor needs to be consulted. If there are several of these questions you can see then it is definitely a time to visit a doctor. The list of things to watch for is 1. Memory loss that disrupts daily life. 2. Challenges in planning or solving problems. 3. Difficulty completing familiar tasks at home, at work or at leisure. 4. Confusion with time or place. 5. Trouble understanding visual images and spatial relationships. 6. New problems with words in speaking or writing.                7. Misplacing things and losing the ability to retrace steps. 8. Decreased or poor judgment.        9. Withdrawal from work or social activities 10. Changes in mood and personality.

Living in North Carolina in 2014, there were about 150 thousand people aged 65 and over with Alzheimer’s. This equates to about 11% of that population. These numbers are expected to increase by 20 % in 2020 and by 40% by 2025. These figures and more can be seen at the Association website at http://www.alz.org/documents_custom/facts_2014/alz_ff_northcarolina.pdf?type=interior_map&facts=undefined&facts=facts.

Not easy to discuss but the Boomers according to the Alzheimer’s Association are expected to have this disease as our “defining disease.” Maybe we could even be called the “generation Alzheimer’s” I would be interested in hearing about your trials and tribulations; your fears and concerns dealing with this disease. Please put your notes below or if you would like anonymity use the email at [email protected]. I do want to hear from you on this topic of vital importance to all of us boomers.

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