What do you understand by the word ‘dementia’
Over the last six month I have carried out five surveys with five different groups – four in the UK and one in the US – to find out what people understand by the word ‘dementia’. This investigation was spurred on by a laissez-faire stance towards this word by influential organisations such as the Alzheimer’s Society UK (personal communication) and the Alzheimer’s Disease International (ADI, The World Report – 2022).
It seems that everybody knows that this word is problematic and loaded with stigma, but nobody wants to touch it, because it is so entrenched that it has become ‘big business’ all over the world, says Nori Graham, the Honorary Vice President of ADI UK in the report mentioned above.
Three of the surveys were carried it using online survey platforms and two using pen-and-paper tools. The online surveys targeted people from age 16+. One pen-and-paper group consisted of 54 sixth form students and one was staff working in a dementia-friendly café.
The results show confusion and uncertainty among all the groups. People are not sure what dementia is, whether it is a disease or an umbrella term. Some responses said that it is both. But it isn’t. It cannot be both. The Amelesia work strives to demonstrate that ‘dementia’ is just a generic term for many different diseases of the brain that present similar symptoms.
This lack of accurate knowledge about the word ‘dementia’ came across on the live webinar held by the ADI on 24 May 2023, at the launch of its From Plan to Impact report of the progress made by the WHO on its Global Action Plan on dementia: an argument was taking place online between those that believe dementia is a syndrome and those that believe dementia is a disease.
If there is discordance between people who should be advising the rest of us, across the world, about dementia, what hope is there for a common strategy in all countries of the world to tackle the rising incidence of this health phenomenon?
EDUCATION is the key and ACCURATE education, starting in schools, as it is wanted by the ADI and by the WHO. Here’s an extract from the Dementia Survey report:
According to the ADI, everybody involved with ‘dementia’, including and especially those diagnosed with it, regret a total lack of knowledge about the condition:
Among the most frequent grievances were a lack of education or knowledge about dementia (WAR 2022 p 55)
Participants to the ADI report talked about the need to be ‘properly educated’ (p56). Many of the individuals who contributed to the report by talking about their own experiences on being diagnosed with ‘dementia’. Their abiding desire, and that of their families and carers, was to be educated about dementia, what it is exactly, what to expect and how they might be better prepared to live this ‘new’ life with altered cognitive skills and abilities.
I suggest that people should learn about diseases of the brain that cause the syndrome that we call ‘dementia’ as part of the general education from a young age. This way, when it happens that someone in our life is diagnosed with Alzheimer’s or similar, we have a basic knowledge of what to expect. Indeed, it could be you or me, or you and me.
I was totally unprepared when I was thrust into the role of carer I had no education in the subject of dementia (Linda Crossman, former carer to her husband, ADI, World Alzheimer Report p 74).