The woman misdiagnosed with Alzheimer’s, and how we can all be affected by the suggestion that we have psychological problems

Psychologists in the Netherlands have documented the case of a 58-year-old woman who was misdiagnosed with Alzheimer’s Disease. The would-be patient consulted a neurologist at a stressful time in her life, in the knowledge that her mother had had the illness. A brain scan indicated reduced activity at the front of her brain (“hypofrontality”), and the neurologist also estimated her performance on a test of cognitive impairment as poor (though no formal test was conducted). On this basis he diagnosed Alzheimer’s*.

The woman was devastated and thereafter her condition deteriorated significantly, to the point that she was permanently confused and, at one point, suicidal. Some months later, after receiving advice from an Alzheimer’s helpline, the woman consulted a different neurologist for a second opinion. She completed comprehensive memory tests and undertook a further brain scan. All results were normal. This neurologist surmised that her earlier hypofrontality was associated with depression. He also went to great lengths to explain the good news about her results and the misinterpretation of her earlier scan, but it proved extremely difficult to assuage her concerns.

Years later, Harald Merckelbach and his team have interviewed the woman and they report that she continues to experience intrusive thoughts about the misdiagnosis and to catastrophise her memory lapses. Merckelbach’s group believe the effect of a misdiagnosis has parallels with the implantation of false memories. Just as false memories are difficult to reverse, so too are mistaken diagnoses. “Conferring a diagnostic label is far from a neutral act,” they said. “Many diagnostic labels have strong stereotypical connotations and sometimes, these will automatically shape the experiences and behaviour of patients, a phenomenon called ‘diagnoses threat‘.”

To test these ideas further, Merckelbach, with colleagues Marko Jelicic and Maarten Pieters, gave 78 undergrads a psychological symptoms questionnaire to complete. Afterwards the students performed Suduko puzzles as a distraction. Next, the researchers went through some of the students’ answers with them. During this review, the researchers inflated two of the answers they’d given to anxiety items. For example, imagine a student had originally indicated that she never had trouble concentrating. The researcher would inflate that answer by two points on the scale, as if she’d said that she sometimes had trouble concentrating, and they then asked the student to explain why she’d given that answer. Remarkably, 63 per cent of the participants failed to notice that their answers had been altered, and they proceeded to describe their experience of the symptoms (readers may notice parallels here with a phenomenon known as “choice blindness“, in which people seem to have little insight into a recent choice they made).

Ten minutes later, and again after one week, all the students re-took the psychological symptoms questionnaire. At both time points, students who’d earlier failed to notice that two of their answers had been altered, now gave higher ratings to those two items, as if they considered themselves to have those symptoms. Such an effect was not observed among the minority of students who’d earlier noticed that their answers had been altered. An analysis of all the students’ original baseline answers uncovered higher average baseline symptoms among those who would fail to notice the inflation of their answers. “Apparently a non-zero symptom intensity level introduces ambiguity; thereby raising the probability that misinformation is accepted,” the researchers said. However, it’s not the case that the influenced participants were simply more keen to give answers that the researchers wanted – they scored just the same on a test of social desirability.

The results from this study are consistent with past research showing how misinformation about physical symptoms can shape how people feel: for example, false feedback about asthmatic wheezing can trigger breathlessness in children with asthma.

Harald Merckelbach and his colleagues said their findings had particular significance for the way medical professionals interact with patients with unexplained symptoms, including those labelled with chronic fatigue, fibromyalgia, irritable bowel syndrome, and chronic pain. “… Expressing concern about the possibility of an underlying illness and, related to this, excessive investigation and attending patient support groups may all contribute to symptom escalation. What these interventions have in common is that they convey the message to the patient that his or her symptoms might be more intense and severe than he/she thinks they are. Our study suggests that blindness to unintended misinformation about the severity of the symptoms may underlie escalation of symptoms.”

The researchers recommend that medics avoid mentioning the whole spectrum of possible symptoms when interviewing patients with medically unexplained symptoms. They also pointed to interesting avenues for future research. For example, notwithstanding the ethical issues involved, could patients benefit from receiving misinformation that lowered their symptom ratings? Also, is the inflated self-reporting of symptoms observed here based purely on exaggerated report, or is it grounded in an altered experience of symptoms?

ResearchBlogging.orgMerckelbach, H., Jelicic, M., and Jonker, C. (2011). Planting a misdiagnosis of Alzheimer’s disease in a person’s mind. Acta Neuropsychiatrica DOI: 10.1111/j.1601-5215.2011.00586.x

Harald Merckelbach, Marko Jelicic and Maarten Pieters (In Press). Misinformation increases symptom reporting – a test – retest experiment. J R Soc Med Sh Rep.

*Many years later, the neurologist was found guilty of having misdiagnosed several patients with Alzheimer’s and 26 malpractice suits were filed against him (the woman featured in this case study was not part of that litigation).

This post was written by Christian Jarrett for the BPS Research Digest.

15 thoughts on “The woman misdiagnosed with Alzheimer’s, and how we can all be affected by the suggestion that we have psychological problems”

  1. really interesting. I was sent to the doctor as a 15 year old with mood swings and was asked whether I ever felt like committing suicide or had thoughts of the same……. my answer was that no I never had…… not long after I had my first suicidal thoughts, which plagued me for about 20 years….

  2. It seems unethical to interfere with their answers if the interference will lead to them having a long term idea that they are anxious.

    How long will the effect last?

  3. Shows, once again, the deep affect of suggestion – susceptibility increases by the degree of importance of the subject. Bernie Siegal, MD shows many worthwhile examples in his books – working in both directions, i.e. showing suggestion used in a positive way w/ patients, as well as the affects of on patients whose doctors were brutally blunt and predicted death w/in a specific time frame. Patients are so 'good', they believe the docs.

  4. Which witch: This dementia alzheimers diagnosis is thrown around will nilly. I always ask when did this person have tests who diagnosed it etc.

    I have just been taken off Lipitor (a Statin for reducing bad cholesterol). The side effects of which have been realised for some time. That is memory loss confusion and poor muscle control. My mother in law was diagnosed with dementia. This confusion I believe was due to the mistaken doubling of a dose of BP pills Royal Melbourne Hospital. Her continued use of Pepsidine an indigestion powder for 30 years (also causes confusion in the elderly) and banned by partner from water after 4.00 pm. The resulting dehydration and consequent reduction in blood supply to brain was obvious, obvious wrinkling of skin and no energy – not allowed to lie down after 8.00 am. I feared recently that I was about to be “put down”. I am grateful to the homeopathy GP for switching me on to Bergamet (tablet) (mot = herb) which gave me access to good cholesterol and reduced bad cholesterol I am a Health scientist academic and activist, amongst other intellectual pursuits.

  5. Interesting that they diagnosed her based on a brain scan that could mean more than one thing and a questionnaire.

  6. Very interesting. I've often wondered actually whether simply asking people about psychiatric symptoms could make them worse. I mean we do this all the time in psychology – give people mood and anxiety questionnaires or whatever – but could that be encouraging people to think about those symptoms in an unhelpful way?

    Problem is it would be hard to do a study on that. “We want to see whether anxiety questionnaires make people more anxious, and to measure anxiety we're going to use … hmm…” I guess you could use a physiological measure like cortisol.

  7. Or, the test subjects did notice their answers had been changed, and were confused, but tried to pretend it was part of the test due to the authority figure syndrome – and then when they redid the test, they remembered those two answers as they had been discussed afterwards. When people re-do tests, their natural instinct is to try and mimic the previous attempt.

    Therefore this is very inconclusive.

  8. “could patients benefit from receiving misinformation that lowered their symptom ratings?”

    how about doctors have sufficient training and education to give ACCURATE diagnoses! is that so novel an idea?

    why should someone have to get a second or third opinion, these people are supposed to be trusted experts and professionals.

    bah…doctors…charlatans all!
    endeavoring to cure the sick and injured using little more than stone knives and bear skins. NEXT!!

  9. I think there may be a parallel with false confessions under police interrogation. That is, in clinical interviews people can be led to say – and even believe – things about themselves which are not true. We should be a lot more aware of this than we are.

  10. This is a great study which shows the power and the affect of human mind. Just believing that you have the disorder that the doctors diagnosed increases the affects of the disorder. And again, with believing that the pills will reduce it, the medication treatment works more efficient.

  11. Isn´t there a question of trust in this picture?
    Manipulation of others mind, making them beleave their future health outcome is known by science or knowledge authorities may influence some people strongly. Used with care, I´d say.
    Mothers use this kind of careful caring all the time, knowing they always will be there to look after to see if the outcome is positive, if not, they hurry to the real doctors, to get the objective answer and solution.

  12. it would be normal ethical practice to debrief after the study was completed. Research studies are normally submitted to a research ethics committee, which are usually very vigorous in ensuring that ethical practices are adhered to. The students would have been told that their answers were inflated and given a better understanding about what the study was about.

Comments are closed.