To Tell or Not to Tell

May 8, 2008 by  
Filed under ALZHEIMER'S

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This post discusses the merits of telling (or not telling) the affected person that he or she has Alzheimer’s disease.

Once Alzheimer’s disease is officially diagnosed, the primary caregiver and close family members have a decision to make.

Do you tell the affected person or not? There are valid arguments on both sides.  Let’s explore some of them.

Yes, tell the affected person what the diagnosis is and what it means.

Advantages of sharing the diagnosis

Knowing sometimes brings relief.  Although the person may not be able to articulate all that is going on, they know that something is awry.

Knowing takes away all need to lie and hide.  Often people in the earlier stages of Alzheimer’s disease make up excuses for their behavior and attempt to cover up mistakes.

Knowing may encourage the affected person to plan for the future.  Unfortunately, the prognosis for Alzheimer’s disease is quite certain.  The patient will know what is coming down the pike and can participate in long-term planning.

Knowing provides opportunity for cooperation on the affected person’s part–Eating a balanced diet, taking medications (which we’ll talk about in detail in an upcoming post), exercising the body and brain can possibly retard the progression of the disease.

Advantages of not sharing the diagnosis

Not knowing allows a sense of “normalcy.”  Denial is a coping mechanism that helps some people to make it through difficult times.

Not knowing may avoid some of the grief associated with reality of facing a terminal illness.

Not knowing may keep anxiety levels low.  For years, even doctors have advocated not causing further stress on already stressed individuals by not disclosing the diagnosis of Alzheimer’s disease.

Not knowing may enable the affected person to keep fighting instead of giving up.  Alzheimer’s is a cruel disease.  Sometimes knowing the future is just too much information for some individuals to handle.

What do the experts say?

According to an article in the March 2008 edition of the Journal of American Geriatrics Society, there may actually be many benefits to telling patients that they  have Alzheimer’s disease.  In addition, the study indicates, that at least in the short run, knowing brings a level of relief.

“Overall, patients told of their diagnosis did not experience an uncontrollable surge in depression or anxiety. Rather, most were relieved to have an explanation for their symptoms. They were also glad to have the opportunity to participate in planning for their futures, and relieved that help was at hand.”

“One reason an Alzheimer’s diagnosis can be comforting to both family members and patients, Dr. Carpenter suggests, is that it provides an explanation for what’s been going on with the patient. Caregivers, he notes, are often quick to attribute symptoms of dementia to the person, rather than the disease, and patients wonder if they are going “crazy.” This study confirms that most patients, regardless of their degree of impairment, tend to experience a sense of relief after getting their diagnosis.”  (see below)

In the end, to tell or not to tell is a very personal decision.  I did tell my mom she had Alzheimer’s disease, but it was long after we received the diagnosis.  I doubt that she understood.  She just looked at me with a blank stare.  I do wish that I had told  her earlier, like when I packed up her belongings and moved her 500 miles.  Maybe, it would have made the transition a little easier, but hindsight is always 20/20.

What’s do you think?  Did you tell?  Would you make the same decision again?

Note:  Kudos to the Fisher Center for Alzheimer’s Research Foundation and their great site, for access to this research.  Click here to read more of the article.

Source: Brian D. Carpenter, PhD, Chengjie Xiong, PhD, Emily K. Porensky, MA, et al: “Reaction to a Dementia Diagnosis in Individuals with Alzheimer’s Disease and Mild Cognitive Impairment,” Journal of the American Geriatrics Society, March 2008, pages 405–412.

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