‘Stigma remains high’ says Paola Bardolino -CEO at ADI – Alzheimer’s Disease International
ADI makes use of a great deal of world-wide human resources, across all continents, to raise awareness and to tackle stigma. It has been working incessantly to eradicate entrenched attitudes for a few decades since its inception in 1984 in the US. Disappointingly, it seems that it is not succeeding in achieving its own goals.
WHAT IS STIGMA? The ADI defines stigma as:
The word stigma describes when a person or a group of people is treated unfairly because the person or group is perceived to be ‘different’. The person or group is not treated in the same way as people who are perceived to be ‘normal’. (ADI – World Alzheimer’s Report 2024).
The ADI report findings suggest that this definition of stigma exactly reflects society’s perception of dementia, across the world, among all strata of society, including medical professionals at all levels of work in this domain.
In 2019 the ADI’s World Alzheimer’s Report found that 62% of health professionals considered dementia a natural process of getting older. Its 2024 Worl Report finds 65% of medical practitioners think the same. It also finds that stigma against dementia is all pervasive.
The ADI identifies the need for a coordinated approach at all levels of society – from individuals through to government policies – to strengthen people’s knowledge of dementia. The people at ADI, from its CEO down, believe that knowing more about dementia – as ADI and other similar organisations have been presenting it for decades – is the solution to the core issues transparent throughout its report: people are frightened of ‘dementia’. The ADI’s 2024 World Report continues to say that ‘people with dementia can still lead meaningful and active lives.’
BUT, can they? I think that we need to stop making such vacuous pronouncements. This begs the questions: what is a meaningful life? What is ‘an active life?’
The individuals I know diagnosed with Alzheimer’s or ‘vascular dementia’ are not able to live as they lived before. Those people diagnosed with Lewy bodies damaging their brains are not aware of the extent of their reduced physical and mental capabilities.
Their lives are totally dependent on people around them, be they family, friends or carers in social care settings.
It is the people who share their lives with those living with Alzheimer’s or similar brain diseases that need to learn new skills in order to adjust to new ways of seeing the world through the eyes of the person living with such brain damage. Once we understand that people with brain damage, literally, think differently from a neurotypical brain, we need to learn how to communicate with them in a way that is fundamentally very different to how we interacted with them before the brain damage.
To achieve this, we must first abandon such phrases as ‘people who have dementia’. (p11 ADI 2024 Word Alzheimer’s Report). Stopping the widespread use of such a word will begin to lift the negative cloak of deceptions and self-delusion. Sadly, may people diagnosed with brain damage themselves have embraced the idea of ‘having dementia’, as have done some contributors to the ADI’s 2024 World Alzheimer’s Report. They believe that because they are ok with the word, so should other people.
But some countries are beginning to eschew the word and Japan has banned it from its societal vocabulary. The word ‘dementia’ has all but been abandoned by the American Psychiatric Association in the 2022 revised DSM-5-TR™ . The APA recommends the use of names of specific diseases which have been categorised as either Minor or Major Neurocognitive Disorders – NCDs. It does say that the term dementia can be used for the sake of continuity in settings where people are ‘accustomed to it’.
As the ADI’s won findings suggest, people do not want to be ok with the word ‘dementia’. They would rather hide away the problem and not seek a medical consultation because they do not want to be labelled with the word that, they have no doubt, will be used to describe their symptoms and henceforth define their person and their world.
How moral is this?
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