"Denial" - "Anosognosia" and Alzheimer's - Misunderstood Conditions and Terms
- Published on Friday, 24 June 2011 20:45
- Written by Stanton O. Berg
There is frequent talk of “Denial” by the victim of Alzheimer’s. My experience is been that for the most part, the early stage victims who have been diagnosed are not in “Denial” of the disease. It is more common to find “Denial” a condition among the victim’s friends, family and relatives. The charge of “Denial” speaks more to the ignorance of those around the victim of the disease. They simply do not understand the disease. In those cases where the victim appears to be in “Denial”, much has to do with the timing of the diagnosis.
I have found that diagnosis very early on is normally accepted by the victim. As the disease progresses, there will come a time of apparent “Denial” as the victim loses both short term memory and long term memory. “Denial” appears as the victim undergoes personality and cognitive changes as they progress deeper into the dementia phase of Alzheimer’s disease.
How could one reasonably expect the victim to do anything but deny the existence of the disease in their body when their memory fails them? After all, they no longer remember the events leading up to the diagnosis, they have lost all ability to think, plan, rationalize and exercise judgment. This is no longer the loved one speaking, this is the disease speaking. Why is this not understood? Why would we accuse them of “Denial” when their mind, memory and mentality have all been damaged! They have simply forgotten. There is a medical term for this forgetting of the disease and it is called: “Anosognosia”. A 2004 study suggests a better term would be “Impaired Awareness” as a replacement for the term “Denial”.
Most often I have found that the only true “Denial” is by others in the Alzheimer’s victim’s family, relatives or friends who do not want to believe this is happening. Sometimes for reasons of their own, they simply do not want to give up the “Status Quo” then existing.
June K. Berg’s Experience – “Denial” and Anosognosia.
(Picture above of June was taken in February 2002 at Atlanta, Georgia during a conference of the American Academy of Forensic Science. June was still in early stages of the disease although into the 5th year since diagnosis and doing very well. The disease began taking over her life in the following year and accelerated thereafter.)
June is a perfect case study and example of acceptance of the diagnosis early on and then a gradual change to an apparent “Denial” of the disease as it progresses into the dementia stages and memory loss is complete.
June herself initiated the medical investigation that resulted in her diagnosis of Alzheimer’s. She became aware of memory problems before I even noted them. She brought the matter to the attention of her Doctor of Geriatrics. This resulted in testing at the University of Minnesota. The diagnosis was early stage Alzheimer’s. She accepted the verdict. We talked about it and what we would do. We decided to make the most of the time we had left before the disease started taking over her mind and mentality. By making accommodations for the short term memory loss, we managed to enjoy a few years doing all the things we had put off doing before the dread diagnosis.
Later after a few years in the early stages, the disease began to take over her life. It was after 5 years that June started to progress into the dementia stages that she went into what most people would call “Denial”. Her personality changed completely. The idea of visiting a doctor for any reason made her angry. I understood what was happening. I knew for the most part, that this was no longer the June that I once knew. The ever present smile and loving disposition was gone. The lady who for 50 years never had a cross word for me now had periods of anger and irritability. It was in this later stage when the disease took over her mind, she no longer knew that she had it, could not even remember she had it or had a one time accepted the fact. She at this point had Anosognosia.
I have researched this matter and find (4) four supporting studies that all agree with me on the subject of “Denial” and “Anosognosia.” (1984, 1993, 1995 and 2004) There were no studies found that dispute this viewpoint.
“Non-recognition of a serious medical disability is termed Anosognosia.” Simon & Schuster: The Neuropsychiatric Guide to Modern Everyday Psychiatry
1984: Dr. Barry Reisberg, MD at New York University Medical Center,
Ageing and Dementia Research Center developed the “Functional Staging (FAST) Scale” which allows professionals and caregivers to chart the decline of people with Alzheimer’s disease. They outline a basic 7 stage chart which appears to be the same as the old Alzheimer’s Association 7 stages. The first stage is actually prior to any symptoms appearing. Stage 2, is the stage of forgetfulness. Stage 3 is Early Confusional. Stage 4 is Late Confusional, Stage 5, is Early Dementia. Stage 6, is Middle Dementia and Stage 7, is Late Dementia.
Two items stood out that demonstrates the new theory on denial. In stage 2, the comment is made: “Appropriate Concern Regarding Symptoms.” In stage 4, the comment is made that now: “Denial is dominant defense mechanism.”
Note: These two comments fit precisely into my own knowledge and understanding of what would appear to be a “Denial”. No denial in early stages but as Alzheimer’s progresses, an apparent denial is born. “Apparent Denial” is the better term as it is not what most persons would think of as a true “Denial.”. It is really not a defense mechanism, in that the victims simply do not remember having the disease.
1993. -Denial of memory deficit in Alzheimer's disease. Am J Psychiatry. 1993 May;150(5):748-51, Sevush S, Leve N. Department of Psychiatry, University of Miami School of Medicine, FL 33136.
Patients with probable Alzheimer's disease often deny or underestimate the severity of their memory impairment. The authors examined the relationships between denial and severity of cognitive impairment in 128 patients with probable Alzheimer's disease. Denial of memory deficit was evaluated by structured interview. A significant correlation was found between denial and overall severity of cognitive deficit and particularly with impairment in object naming. A negative correlation was found between denial and depression. The association between denial and cognitive impairment may suggest that denial of probable Alzheimer's disease results from disruption of cognitive abilities needed for awareness of illness.
Note: This study also is “on all fours” with my own understanding of “Denial” as found in Alzheimer’s.
1995 - Anosognosia in Alzheimer's disease: a study of associated factors
R Migliorelli, A Teson, L Sabe, G Petracca, M Petracchi, R Leiguarda and SE Starkstein Department of Behavioral Neurology, Raul Carrea Institute of Neurological Research, Buenos Aires, Argentina. - J Neuropsychiatry Clin Neurosci 1995; 7:338-344
The authors examined the prevalence and correlates of Anosognosia in a consecutive series of patients (73) with probable Alzheimer's disease Patients were examined with the Anosognosia Questionnaire-Dementia, which showed good reliability and validity. On the basis of the AQ- D scores, patients were divided into those with Anosognosia and those without Anosognosia. Patients with Anosognosia showed a significantly longer duration of illness, more severe cognitive impairments and deficits in activities of daily living… than AD patients without Anosognosia.
Note: Again there is complete agreement that the so-called denial is really (Anosognosia) the result of the progression and advanced severity of the disease and is not present in the early stages.
2004 Awareness of deficits and Anosognosia in Alzheimer's disease. Antoine C, Antoine P, Guermonprez P, Frigard B.Centre Hospitalier Intercommunal de Wasquehal, Le Molinel, 59290 Wasquehal. Encephale. 2004 Nov-Dec;30(6):570-7.
“This article reviews studies concerning unawareness of deficits in Alzheimer's disease. “Unawareness of the deficits associated with dementia has frequently been reported in clinical descriptions of the later stages of the disease. Consistent with the literature, we shall use the expressions “impaired awareness”, unawareness of deficits, anosognosia, and lack of insight interchangeably. Anosognosia can be defined as an impaired ability to recognize the presence or appreciate the severity of deficits in sensory, perceptual, motor, affective, or cognitive functioning. Unawareness has been operationally defined in a variety of ways.”