Why is cognitive decline a taboo?

Cognitive decline is a taboo. And not only among laypeople. Health professional are also intimidated by this topic and avoid discussing it with their patients. Cognitive symptoms of common diseases are also often understated on professional webpages. For example, cognitive impairment is present to some degree among at least 40% of multiple sclerosis (MS) patients and yet this is hardly mentioned in some educational materials. Parkinson´s disease is another common disease and known to many. Its cardinal symptoms are tremor, slowed movements, rigid muscles and impaired balance. Like MS it can be accompanied by difficulties with thinking. As with MS I believe that the cognitive problems in Parkinson´s disease are understated and patients and families are probably, on the whole, not well prepared for those difficulties when they arise. This is unfortunate.

Why is cognitive decline a taboo?

Why do we avoid to discuss the fact that someone is losing, or might lose, his memory or other cognitive abilities? Why is there a tendency to disregard memory problems among the elderly by saying something like: Oh well, he is  75 years old! Why does it still come as a surprise to some that a brain disease, such as MS for example, often causes problems with attention and memory and can even lead to personality changes? Even minor attentional problems in MS can cause considerable difficulties if the patient has a cognitively demanding profession.

The reasons for avoiding discussing cognitive decline are probably many but I will mention two:

1)  When the cognitive impairment is severe treatment options may be limited. Many health professional therefore avoid discussing the topic altogether. However, with less severe cognitive problems there may be ways to circumvent, or diminish, difficulties in daily living. Avoidance should therefore not be an option. I also believe it is wrong. We should meet our patients with empathy. They need to understand their symptoms and it is up to us to explain them.

2) Memory loss, reasonings skills and personality changes are more central to our personal identity and relationships with our loved ones than our ability to walk, run and keep our balance. But it is easier to discuss the physical symptoms. They are more concrete and easier to explain. Cognitive disabilities are emotionally laden and more difficult to discuss. Patients with cognitive problems can feel ashamed and they often say they feel stupid and inferior. These are difficult feelings to handle and work through. Yet, it is extremely important for the patient and family to hear that those cognitive problems are quite common. It makes them much easier to deal with.

Things are slowly changing

About 20 years ago when I started working with patients with neurological disease it was often overlooked that patients with Parkinson´s disease or MS could have cognitive problems and not only motor or sensory disturbances. Things have changed for the better but I believe we still have a long way to go. Cognitive difficulties need to be discussed openly. They challenge the patients as well as their loved ones. We are not doing the patients and their families any favors by avoiding the topic and keeping it a taboo.

In this excellent documentary about Parkinson´s disease the cognitive aspect of the disease is discussed openly. It is worth watching: http://video.pbs.org/video/1082086931.


Photo credit: MichaelMaggs (Own work) [CC-BY-SA-2.5 (http://creativecommons.org/licenses/by-sa/2.5)], via Wikimedia Commons


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