Friday, January 10, 2014

Courageous Family Helps Explore the New Frontier of Dementia Diagnosis

The earliest signs of dementia are often subtle.  It can be tempting and easy to brush them off as merely the signs of fatigue or being overwhelmed.  Ironically, at the other end of the spectrum, advanced dementia, it may also be easy to jump to conclusions, believing one diagnosis fits all forms of dementia.  The modern assumption is probably most often Alzheimer's, while in earlier decades the label might have been simply "senility."

I often ask a medical or gerontology professional with expertise in the various forms of dementia, including Lewy-Body Disease, Frontotemporal Dementia (FTD), Parkinson's related dementia, vascular dementia, as well as Alzheimer's, to speak to my elder law classes.  The lectures are fascinating (okay, also a little frightening). But often, near the near the end of a class discussion, a student will ask, "if there is no cure for dementia, does diagnosis of the source really matter?"

A family's search for answers suggests there are may be very good reasons to pursue a definitive diagnosis, even if the ultimate answer is possible only after the death of a loved one impacted by disease.  The Ruhrig Family in central Pennsylvania was perplexed by the symptoms and rapid progress of confusion for the patriarch of their family.  Sixty-six year old Weston Ruhrig passed away less than a year after the family first began seeing signs of confusion:

"The 6-2, 210-pounder was up by 7 a.m. daily ... seemed always on the move. In June [2013], he conducted a charity auction for United Cerebral Palsy of Central Pennsylvania, just as he had since 1987. He seemed normal.


But his family began noticing odd behavior. Ruhrig became withdrawn. He continually locked doors, sometimes locking out his wife after she had gone to the yard or garage during daylight. Ruhrig was known for harping on people to turn off lights to save electricity. Now he switched on lights for no reason and left the room.


By September [2013], his family had persuaded him to see his family doctor. The doctor found no medical problems but referred him to a neurologist.  Ruhrig felt nothing was wrong. In November, the neurologist gave Ruhrig cognitive tests. Ruhrig named the president and recalled facts including his wife’s birth date. But he couldn’t correctly state her age or calculate it. Still, he joked during the visit."

As carefully detailed by Patriot News writer David Wenner, eventually doctors suggested the problem was Alzheimer's.  But the family, contrasting their father's symptoms with those of others they knew with more traditional presentations of Alzheimer's related dementia, persisted in seeking a more precise diagnosis.  An MRI was viewed as normal.  Another test was a spinal tap.  Unfortunately, Mr. Ruhrig died suddenly in December 2013, after a fall that led to a rapid decline. 

The diagnosis occurred after his death, based on the results of the spinal fluid analysis:  Creutzfeldt-Jakob Disease, a very rare variation of the family of diseases associated with "Mad Cow" and "chronic wasting" in deer, but a form that is not considered to be caused by eating or handling contaminated meat.  Deterioration associated with the condition is rapid, usually leading to death within a year, and the cause of the disease is currently unknown, and there are no cures.

But the courage of the family in pursuing and talking about the diagnosis could help others, as better understanding of the various forms and causes of dementia should help the larger community of physicians, epidemiologists and other experts chart the frontiers of dementia.  Heredity, life-style, diet, viruses, environmental impacts  -- with the help of families, all of these factors and others might better be understood in the search for causes and solutions for the different forms of dementia. 

For more, read "Hampton Township Man Dies of Mysterious Disease Sometimes Associated with Mad Cow and Chronic Wasting."  Thanks to my colleague, Professor Laurel Terry, for pointing me to this interesting local article.

Cognitive Impairment, Current Affairs, Dementia/Alzheimer’s, Health Care/Long Term Care, Statistics | Permalink

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