My endeavour to turn our understanding of ‘dementia’ upside down is constantly challenged by the established dogmas.
I have corresponded with people at the Alzheimer’s Society (UK) and at Alzheimer’s Disease International. I am becoming more convinced that it is almost impossible to shift decades-old beliefs and mind sets, not to mention the millions of dollars invested in this one word: dementia.
I have started an investigation into what people, ordinary people, understand by the word dementia.
I designed a simple questionnaire with 11 simple questions to try and gauge people’s understanding of ‘dementia’ and Alzheimer’s.
I asked 200 anonymous people on-line to reply to these 11 questions.
The responses suggest that people are confused and do not have a clear understanding of the difference between ‘dementia’ and diseases of the brain which present common symptoms categorised as ‘dementia’.
Whilst nearly four-fifths of the 200 respondents – 89% – know that ‘dementia’ is an umbrella term for diseases of the brain that cause cognitive impairment and a-typical psychological and social behaviours, nearly four-fifths of them – 37% – say that the terms ‘dementia’ and Alzheimer’s describe the same condition.
Although over a quarter of the people do not find the word ‘dementia’ offensive, about 50% of them would like people to use the name of the disease if they were to be diagnosed with Alzheimer’s or Lewy Body (or other brain diseases) rather than be referred to as ‘having dementia’.
My conclusion from the analysis of the responses to all the eleven questions is that 200 respondents appear to have a confused idea of what ‘dementia’ is. As a result, the word ‘dementia’ is frequently used inaccurately to describe a condition such as Alzheimer’s.
The medical profession and influential bodies such as the Alzheimer’s Society may need to give more accurate information to the public, so that people can have an accurate understanding of what is a disease and what language describes that disease better to make informed choices.