Saturday, August 10, 2013

Alzheimer's and Baby Boomers

My wife has Alzheimer’s Disease (AD).  Only 63 when diagnosed last year, my wife is technically classified as having EOAD ... Early Onset Alzheimer’s Disease ... a tag given to those who are diagnosed before the age of 65.  According to the Alzheimer’s Association, 5.3 million people in this country currently have AD and 200,000 are younger the age of 65.  What is really scary is that with 10,000 baby boomers turning 65 each day starting next year, and with no cure currently in sight, some health experts have estimated that we may have as many as 16 million people suffering from AD by 2050.  The medical profession, and helping organizations such as the Alzheimer’s Association, must change some current practices to deal more effectively with the growing number of ‘‘boomer patients’’ they are soon going to see.

The Alzheimer’s Association currently provides many day care activity programs for those with moderate to severe stages of AD, and that is a good thing.  However, there is virtually no support available to those with EOAD or for those in the earliest stages of AD.  As but one example, here on Long Island, NY, where the Alzheimer’s Association estimates that there are 55,000 people with AD, they currently offer 35 groups for spouses and/or caregivers and many day care program opportunities for those with AD.  However, they provide no support groups for people with AD.  Not one.  This is pretty much true for the entire country ... many activity groups but few support groups for those with AD.  One explanation given to me is that people with EOAD and early stage AD often do not want to talk about their feelings with others ... they find it too depressing. And that may well be true.  However, what about those in early stages or with EOAD who do want to talk with others in similar circumstances?  Shouldn’t there be at least a few support groups led by trained social workers available to them?

Fortunately, here on Long Island we also have LIAF, the Long Island Alzheimer’s Foundation, which does have groups for those in early to moderate stages of AD and a separate group for their spouses/caregivers.  My wife and I attend these weekly meetings and find them very helpful.  But not even LIAF has a group solely for those with EOAD or for spouses of those with EOAD.

As is true for each successive generation, we boomers are quite different from our parents in many ways.  Having grown up with computers and the internet, many of us are quite knowledgeable about AD through online sources of information, and some of us, at least, would like to meet with others in similar situations.  Unfortunately, presently throughout much of this country, there are no such opportunities. This must change. 

The medical profession must also change. As is true for many eventually diagnosed with AD, my wife began exhibiting AD symptoms for several years before the official diagnosis was made.  I told doctors about her worsening symptoms at each visit, but my comments were routinely ignored.  I noted how she kept asking me the same question over and over without any recollection of having just asked me that same question minutes earlier.  I mentioned her getting lost while driving in our community, her disorientation, her aphasia.  I said that my wife was forgetting how to do things she used to do routinely, and how she was regularly misplacing and losing objects at home and when we traveled.  However, her initial cognitive testing results were good, MRIs and blood work did not show any problems, and doctors suggested that the symptoms I described were probably due to stress, and then later to anxiety.  When cognitive testing results worsened later on, the diagnosis became severe cognitive impairment due to depression.  I continued to note that her symptoms were not related to stress or depression according to any website I had consulted, but my comments were routinely ignored.  After continued worsening of her symptoms, we eventually went for a second opinion at a hospital-affiliated Alzheimer’s Disease Research Center where the diagnosis was probable AD ... and definitely not stress, anxiety, or depression.

I’ll be the first to admit that some of the early signs of AD are identical to signs of stress and/or depression.  A doctor who diagnoses stress or depression as the cause of memory disorders can offer hope to patients.  Anti-depressant medications and stress-reduction techniques may often lead to improvement. However, a doctor who diagnoses probable AD gives patients a death sentence because AD is a terminal disease with no cure, and the average person diagnosed with AD lives for only 8 years.  I wonder whether some neurologists and cognitive psychologists think, why not treat the problem as if it were stress or depression since we may be able to help the patient improve; if I diagnose AD, then there is no hope for improvement.

Many AD spouses I have contacted across the country on websites devoted specifically to spouses of those with AD have, sadly, reported identical experiences with their doctors.  So many reported that their observations were also ignored that I must conclude that this may be common practice ... doctors basing their diagnosis and treatment recommendations solely on objective testing results after relatively brief visits with patients, largely disregarding anecdotal observations of spouses and caregivers.  This needs to change!  Empirical data from cognitive testing and medical procedures are very important but so are anecdotal and observational data from spouses and caregivers who observe noticeable changes in the patient’s daily life.  Empowered by information readily available on the internet, baby boomers may have valuable insights to offer doctors about their loved one’s symptoms that may not be apparent in brief office visits or demonstrated on objective tests of memory.

Alzheimer’s Disease takes a terrible toll on those suffering from the disease and on their spouses/caregivers.  Doctors must listen more carefully to symptoms of patients reported by their spouses/caregivers so those with probable AD are diagnosed early and can begin taking medications that may help slow the inevitable degenerative progression.  Doctors as well as local/ national AD organizations should also be working together to provide patients with ready access to support groups as patients progress though the stages of this fatal disease ... and helping to better meet the needs of those who are diagnosed at a young age and/or are in the very early stages of the disease.

Published in American Journal of Alzheimer's Disease & Other Dementias, September, 2010, Vol. 25, No. 6, pp.477-478.  Access at:

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