Cognitive problems are common in patients with a neurological disorder. A person with Multiple Sclerosis (MS) may experience forgetfulness related to slower and less flexible thinking. Memory problems are a core symptom of Alzheimer’s disease. You may also experience cognitive problems from time to time. However, is this always due to cognitive impairment? Are these problems always disease-related? And, how can we tell whether a cognitive problem we experience is something to worry about?

Mrs. B

To clarify this, let’s start with an example: the story of Mrs. B. She is a 35-year-old teacher who experiences cognitive difficulties that impact her daily life. She decides to consult her GP who, as doctors usually do, asks ‘what seems to be the problem?’ A seemingly simple question, but for Mrs. B not that easy to answer. She starts explaining about a fog in her mind when trying to think, about not being able to find the right words. She explains that she has difficulties performing some of her normal tasks, such as organizing a dinner for friends or grading students’ papers. She is afraid that these problems are a consequence of the MS she was diagnosed with.

Yet her husband sees no real cognitive changes. His wife was diagnosed a year ago and has problems accepting her illness. He notices that she is feeling depressed and anxious. Clearly, in this case the patient, Mrs. B, and the informant, her husband, differ in opinion. The doctor decides to refer Mrs. B. for a neuropsychological assessment, which includes tests to examine her intellectual functioning, memory, concentration, language, and executive functioning, and an assessment of depression and anxiety. The neuropsychologist finds no objective evidence of cognitive impairment, but there is an indication of a mild depression. Mrs. B is therefore referred for further psychological treatment.

Lack of insight or not?

In the above case, the patient experiences cognitive problems, but no evidence of impairment is found on a neuropsychological assessment. The opposite may occur as well. Some patients show a lack of insight into their cognitive difficulties. They may, for example, believe that their forgetfulness is normal for their age. This lack of insight becomes worse with increasing cognitive impairment and is associated with feelings of euphoria. Hence, in these cases the informant may recognize the problem but the patient doesn’t.

Mrs. B., on the other hand, did not overestimate her cognitive abilities, but ‘underestimated’ them. These underestimators are often characterized by more depression and anxiety, different coping styles and more psychosocial stress. This means that although no objective cognitive problems are present, there are psychological problems in need of attention. Thus, it is always important to take the cognitive problems that someone experiences seriously.

Another risk of underestimating is that people may make rash decisions based on their belief that the chronic disease they are suffering from has progressed. For example, in a recent study in patients with MS we found that comparable patients without a paid job reported more executive problems than patients with a paid job. However, no impairments were found in a neuropsychological assessment. The cognitive problems the patients experienced may have played a role in their decision not to work. Many patients with MS stop working within 10 years of diagnosis despite a work history, and despite their young age. If we can help them cope with the cognitive difficulties they experience, they may be able to participate in society for a longer period of time.

Finally, we should not forget the situation – probably the most prevalent one – where patients show accurate insight into their cognitive abilities.

Which source to trust?

Physicians often consult informants such as the patient’s spouse or family to get a better picture of the patient’s functioning. Although this is a good idea, informants should not be considered infallible. Our study showed that informants were quite likely to overestimate their loved one’s capacities, though they were less inclined to underestimate. This overestimation may have something to do with the fact that cognitive problems are hidden because patients avoid performing cognitively challenging tasks.

So, how can we tell whether a cognitive problem is actually something to worry about? From the doctor’s perspective it is important to take patients’ experiences of cognitive problems seriously and check both the patient’s and informant’s perspective. The patient should be referred for a neuropsychological assessment if either the patient or the informant indicates that cognitive or psychological problems are interfering with daily life. There is a need for short and easy-to-administer test batteries in this respect (plenty to do for neuropsychologists!). Even when there is no evidence of cognitive impairment, other (psychological) factors may be involved that are in need of treatment, as in the case of Mrs. B.