During a recent intervention in the podcast
Conversations with CamEmma Heming Willis has lifted the veil on a striking daily reality: the interpreter of Die Hard doesn’t know he’s sick.
For her, this absence of consciousness is both a “blessing and a curse”. She explains that her husband – like other patients affected by dementia – no longer makes the link between his difficulties and the pathology from which he suffers.
“I think they think this is their normal. (…) It’s not denial, it’s just that their brain is changing. It’s part of the illness.”
This situation, while disconcerting to the public, is a common component of frontotemporal dementia, a condition that affects the frontal and temporal lobes, altering behavior and communication abilities.
Anosognosia or denial: a fundamental distinction
It is common to confuse anosognosia with denial, but for Dr. Wilfrid Casseron, the difference is crucial. Denial is a psychological defense mechanism, while anosognosia is a neurological symptom.
“Anosognosia is a neuropsychological mechanism different from denial. It is a symptom characterized by the absence of awareness of being ill. specifies the neurologist.
Unlike denial, which can evolve over time, anosognosia results from actual brain damage.
“Denial passes, anosognosia does not go away. Patients do not realize that they have a disorder and are very surprised, even sometimes angry, when it is pointed out to them.”
An “invisible” symptom at the heart of memory diseases
Although we often associate memory loss with Alzheimer’s disease, anosognosia is one of the “cardinal symptoms”. It is particularly early and marked in frontotemporal dementias like that of Bruce Willis.
Dr. Casseron emphasizes that this lack of understanding of the disorder is not always total, but often partial.
“It is rarely total, that is to say, it is often a minimization of symptoms rather than complete denial.“.
Some patients retain intermittent “flashes” of lucidity, which can paradoxically cause great distress. “It is because of these intermittent moments of lucidity that these patients also have mood disorders, that is to say, it depresses them.” explains the doctor.
The challenges of care, refusal of care and exhaustion of loved ones
For those around you, anosognosia is a constant challenge. The patient’s irritability and refusal to consult can considerably delay the diagnosis and the provision of appropriate help.
“This sometimes creates difficulties for families, because they have difficulty making the patient aware of things, but also for the caregiver because there is often a refusal of care.“, deplores Dr Casseron.
Faced with a patient who says that “everything is fine” when he gets lost or forgets the existence of his own car, loved ones may feel helpless or annoyed.
However, the neurologist insists on the need for patience: the patient is not acting in bad faith, he is biologically incapable of perceiving his decline.
“This is a negative factor in the provision of care unfortunately.” he concludes, recalling that this symptom often tends to worsen over time.
How do you go about getting your sick loved one to accept care?
The question of acceptance of care is obviously central in a situation of this kind. Is it possible to still get your loved one to consult, while avoiding conflict?
Dr. Casseron is clear. “Unfortunately, there is no miracle solution. Most of the time, families refer them to us for their memory problems, but sometimes patients refuse to come and there is not much we can do.”
Before ending, however, on a positive note. “When the patient accepts the consultation, which happens all the same, we are most of the time able to perform some examinations on them.”