It must be obvious by now that I do not like the word ‘dementia’. I do not like it because it is such a bad word, loaded with so much negativity. With so many people around the world being so frightened by this terrible word that they will hide their symptoms telling them that ‘something is wrong’ – according to the ADI’s1 2024 World Alzheimer’s Report – surely it is time that we stop using the word?
The ADI’s 2019 World Report found widespread stigma around the world surrounding the word ‘dementia’. Its 2024 World Alzheimer’s report found an increase in people’s negative perception of the word ‘dementia’. The ADI’s response to this phenomenon is a rallying cry to raise people out of their misconceptions. Basically, it is saying that the stigma exists because people do not understand the ‘disease’.
BUT, with capital letters, BUT:
- Dementia is not a disease
- Alzheimer’s is a disease
- Parkinson’s is a disease
- Lewy Body is a disease
- DEMENTIA IS NOT A DISEASE – dementia is a ‘syndrome’
SO, what is a disease? What is a syndrome? What is dementia exactly?
I shall insert here extracts from the manifesto that I published on Amazon in 2022 – Amazon.co.uk : reconceptualising dementia – pages 24-26
What is a disease?
A disease is an abnormality in the normal functioning of the body which is indicated by certain symptoms triggered by a specific cause. Some diseases are grouped into major classes of diseases such as auto-immune diseases. There are many classifications for diseases. In one classification, diseases are divided into 4 main classes as pathogenic diseases, physiological diseases, hereditary diseases, and deficiency diseases. Diseases are also classified as communicable and non-communicable diseases. The characteristic feature of diseases with respect to syndrome is that it has a specific cause, a specific set of symptoms, and consistent change in anatomy.
Examples for diseases: Cholera, syphilis, malaria, Lyme disease, Meningococcal disease, Hepatitis, Hemophilia, Typhoid fever, meningitis, dengue, measles etc.
AND what is a syndrome?
A syndrome is the association of several clinically recognizable features. Any sickness or illness cannot be called a syndrome. A syndrome is a special case. This word is given to a set of symptoms that may occur altogether at once. The word “syndrome” comes from the Greek meaning “run together”.
A syndrome cannot be traced down to a single cause because a set of symptoms may occur due to one disease or even due to multiple disease conditions. Sometimes syndrome is the name given to a set of symptoms before the actual cause is found. One such example is AIDS- Acquired Immune Deficiency Syndrome which referred to the set of symptoms that occur due to HIV infection. The word is still in use even after finding the HIV infection.
Examples for syndromes: Down’s syndrome, Parkinson’s syndrome, Acquired Immune Deficiency Syndrome, Cervical Syndrome, Cushing’s syndrome, Restless legs Syndrome, Scalded Skin Syndrome, Toxic Shock Syndrome, Yellow-Nail Syndrome, Acute Radiation Syndrome etc.
What is the difference between Syndrome and Disease?
- Syndrome is a set of symptoms occurring altogether, but the disease is an abnormality in normal functioning of the body.
- Syndrome does not have a specified cause, but a disease does.
- A Syndrome may indicate a disease or even a combination of diseases.
- Two or more different diseases may cause the same syndrome.
- Treating a syndrome is symptomatic but treating a disease allows treating the underlying cause because it is known.
My sister asked me the other day: ‘Mina, what IS dementia?’ So I told her the following, as described by the NHS website:
Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. This may include problems with: memory loss, thinking speed, mental sharpness and quickness, language, understanding, judgement, mood, movement, difficulties carrying out daily activities. There are many different causes of dementia. People often get confused about the difference between Alzheimer’s disease and dementia.
AND the following is a definition by the Academic Kurt A Jellinger, writing in 2010:
dementia is not a specific disorder or disease, but a description for a syndrome (group of symptoms) associated with loss of memory and other cognitive/intellectual functions that are severe enough to interfere with the tasks of daily life, lasting more than six months, but not present at birth, and not associated with loss of consciousness2
SO, if ‘dementia’ is not a disease, why do people around the world think that it is?
1 Alzheimer’s Disease International
2 Kurt A Jellinger (October 2016. Should the word ‘dementia’ be forgotten? Journal of Cellular and Molecular Medicine (Open Access)
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