The use of the word dementia is often wrong, based upon lack of good education about the dreaded disease. I have heard people refer to patients (often loved ones) suffering from dementia as "crazy, out of their minds, or berserk." These inappropriate and unfortunate words are simply products of ignorance and are demeaning to many wonderful people who have contracted a disease, much like a person develops cancer. The results of contracting dementia can be troublesome to those who don't understand the disease, so it becomes natural to dismiss the patient using derogatory terms to mask confusion, disappointment, and fear.
Dementia is a disease which physically changes the makeup of the brain and its ability at times to carry out even the most simple, familiar tasks. It is most common in the elderly, although there are numerous cases of dementia in younger adults, brought about more commonly by trauma, genetics or the onset of a related disease.
It is important to remember that dementia is an "umbrella" term which can be used to describe a number of diseases such as Alzheimer's Disease and Parkinson's disease. There is a whole list of illnesses which can fall under the umbrella, but most people seem to be more familiar with Alzheimer's Disease and tend to treat the terms as if they are the same thing. They aren't.
Because of the loss of many normal functions and the onset of difficult behavior such as memory loss, loved ones may tend to deny the existence of dementia at first. Most elderly people experience some memory loss, so it is easy to dismiss the symptoms early on. Unfortunately, that means that many dementia patients aren't properly diagnosed until the disease has taken a greater toll, preventing the patient from having good care and quality life experience while the loved one in denial resists appropriate treatment.
People with dementia can be confused and demonstrate unusual behavior. But they, too, are struggling with the recognition of the onset of the disease, and require patience and understanding.
My wife is director of a wonderful facility which is home to 44 people with varying forms of dementia. They are lovingly cared for, entertained, stimulated to function, and treated as people with limitations. They are not ridiculed or treated like children. For the most part they are happy, and see their new residence as their homes. As the disease progresses they are supervised and evaluated. The primary point to be made is that they are shown love and affection. It is amazing to experience them as they dance, paint, play the piano and participate in activities to stimulate their cognitive skills.
As the disease progresses and the patient slips further and further into memory loss and related symptoms, loved ones may become stressed about the horror of the disease. In reality, the patient also is slipping into a life free from stress and may be less and less aware of his or her situation. A generalized happiness may be the result. It takes time for the loved ones to understand this.
Recently the husband of Supreme Court Justice Sandra Day O'Connor died after many years of experiencing dementia. Her way of supporting him in his dementia was outstanding and has become a model for others. Even when he "fell in love" with another resident of the facility in which he lived, she was supportive, encouraging his good feelings, and shifting the focus from her needs to his. There is no question that some dementia situations can be difficult. But with good care, appropriate supervision, and careful selection of programs for the patient, life can be pleasant...for the patient and the loved ones.
Reports in today's news tell of a 98 year old dementia patient who may have been responsible for the death of her 100 year old roommate. It is an example of an unfortunate situation in which the dementia wasn't given proper recognition and response. The result is unusual and, from my perspective, unnecessary. The case will have its own life, but should not be seen as normative. To the contrary, there could have been a more appropriate story for both persons involved.
Photo Credit:Telegraph.co.uk
*Definition: Dictionary.com Unabridged
Based on the Random House Dictionary, © Random House, Inc. 2009
important and thoughtful. as with your post about euphemisms for death, i appreciate the distinction between family members' needs and sensitivities compared to those of the "patient." and hearing about your wife's work adds a nicely personal touch.
ReplyDeleteNice post, Dad. Well-said and appropriate. The story in the news is both sad and confusing. Mom is so good at her job and has a true sense of responsibility and compassion for her residents. It's a good point that they are people who require boundaries, and she recognizes that, but treats them with dignity. She should be cloned.
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