Altering our perception of dementia by:

Abolishing the word dementia

Stop saying that the person that we knew ‘has gone’

Rethinking the concept of time and space in the disabled mind

International World Conference Presentation

Krakow, April 2024

This video, presented by the International Alzheimer’s Society at the International World Conference in Krakow in April 2024 is a summary of a training programme that I developed for people to learn how to talk with people living with Alzheimer’s.

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SURVEY ENQUIRY:
What do you understand by the word dementia?

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A small number of students, one community visitor and one care home manager volunteered to participate in a pilot communicative training programme which aims to abolish the word dementia, reconsider the notion of time and space in the disabled mind and recognise the permanence of the core person.

What is Amelesia?

Amelesia is the new concept that is proposed on this site to replace the idea of dementia and the word dementia in the context of the conditions which it describes. In the Manifesto pages on this site a case is made for why this is necessary. Briefly summarised here are answers to the questions: what is dementia and why is Amelesia a more congenial word to replace it? 

Why Amelesia instead of dementia?

Dementia describes the condition that affects millions of people world-wide who display symptoms of damaged memory capacities, poor mental co-ordination, disorientation, inability to reason and other symptoms associated with such diseases as Alzheimer and Lewi bodies.

These diseases have been conveniently grouped under the term dementia. But dementia itself is not a disease. The word dementia describes a psychological state brought about by damage to the neural and cellular networks in the physical structure of the brain. The damage caused by these events do not allow for normal information to travel around the brain, because parts of these circuits are blocked by the damage. The term dementia has become an all-encompassing umbrella term to describe the consequential symptoms that present as a result of this damage caused by lots of different and unique events.

Dementia is a Latin word. It means ‘out of one’s mind’.  When we say to someone, in anger: ‘you are totally demented’…. ‘you are completely out of your mind’ … we are insulting that person’s state of mind and its integrity.

Amelesia is unmindfulness: Amelesia is the condition or state of unmindfulness. It is a compound noun made up with Ameles, which in Greek means unmindfulness and the Greek suffix –sia – which means the state or the condition in which one is found to be, psychologically and/or medically.

What is unmindfulness and why it describes the Alzheimer’s mind better than dementia

Unmindfulness is the opposite of mindfulness¹. If we look at what mindfulness is, we see immediately that, as a mental state, mindfulness does not describe the condition of people affected by Alzheimer’s like symptoms, and therefore they are in a state of unmindfulness.

Modern approaches to mindfulness are many and very varied, but each derives its philosophy and approach from the traditional Buddhist tenet that, to be mindful is to focus one’s attention to what is happening now, in the present moment.

People affected by symptoms associated with diseases such as Alzheimer – disorientation, confusion, fear, anxiety, anger – do not have the mental ability or agility to be present in the moment. If they manage it, it is a fleeting sense of being part of an event such as drinking a cup of tea or acknowledging a greeting (good morning!).

The pertinent question is: what is the moment? The moment experienced in conditions such as Alzheimer’s is quickly superseded by the immediately adjacent moment. The previously adjacent moment has been forgotten, relegated to non-experience, not event to the past. It has not happened.

It seems that those affected by Alzheimer’s like symptoms are not able to process what is happening ‘now’ and add it to the sum of their life’s experiences. However, they seem able to recount experiences lived long ago as if they are happening now. For example, they will say that they are waiting for their daughter to pop in for tea later, when the children are back from school.

The way people with Alzheimer’s, and similar conditions, experience it is far removed from our understanding of ‘the moment’. But to them, this moment is as real as if it were happening now, the way we understand ‘now’ to be. By ‘we’ I mean we who are not – or believe that we are not – affected by Alzheimer’s like symptoms. I suggest that we should think of the moment as a continuous present, which, I posit, is what Amelesians experience.

A continuous present

In this mental world of unmindfulness we must abandon our concept of time and space – as we have learned to understand it – in terms of sequential events which started in the past, are being experienced now in the present and will in a yet to happen future. The unmindful mind comes across as if suspended in an ‘extended present’. In his book Reality is not what it seems. The journey to quantum gravity (Penguin Books 2017) the Italian theoretical physicist Carlo Rovelli explains Einstein’s theory – that time and space do not exist in the universe as sequential processes – like this:

Between the past and the future of an event (for example between the past and the future for you, where you are, and in the precise moment in which you are reading) there exists an ‘intermediate zone’ an ‘expanded present’; a zone that is neither past nor future.  

We are so used, at the deepest subconscious level, to our mind flitting from one moment to the next, from the past to the present and to what may happen in the future. The racing of ideas jostling for prominent positions in our ‘now moment’ is the result of constant and continuous triggers. An innocuous word heard accidentally on the radio will trigger an instant of ‘intense experience twenty years ago on the beach of southern Turkey…or was it Greece? … well it doesn’t matter …it was certainly exactly as that person described it …wouldn’t it be just amazing to go back there again, maybe next year with Nicole and Joshua, but maybe they will be too busy and I have promised Jasmine that we would spend a few days with them, we must do it soon…but, what are they talking about now? That’s a stupid thing to say…What are they talking about?…’ and so we have lost the thread of the play to which we had been listening on the radio … Isn’t that how our mind meanders when we are not concentrating on this moment?

That is how I imagine the mind of the person affected by all these diseases that affects memory and cognition. But with one big difference: the affected mind is not able to distinguish between that intense moment twenty years ago with this moment now, with what is playing on the radio, with the other pressing urgency of the task I must finish now before I can move on to the next one. The mind of the affected brain is not able to recognise the triggers that enable the mind to make all these links across time and space. The diseased brain is not able to tell its mind where to pause and contemplate how a memory from the past is just that, a memory. That memory is relived every time it comes to the surface of the mind. Over and over like ground-hog day. The disabled brain cannot tell its mind that it is making a mistake. This mind only recognises its images and they are very intensely relived as if they are happening now. They are stuck in a continuous present. They seem to have no awareness of the passing of time as we understand it, indeed as they understood it and lived it before they were deprived of normal functioning of their mind.

Aspects of traditional mindfulness in a continuous present

The 5-aggregate model of the mind

Traditional concepts of mindfulness derive from an old model of how the mind works, namely at the level of material awareness, emotional feelings, perception, volition and sensory consciousness.  Amelesians manifest all of these processes in unique and individual ways, but not, maybe, in a rational way that makes sense to us non-Amelesians.

Contemplation and reflection on causation

Within this proposition that Amelesians mentally live in a state of continuous moment, where the past, present and future do not exist as we understand them, Amelesians do present aspects of mindfulness in the Buddhist tradition,  for example contemplation and reflection on causation: i.e. when action will cause something else to take place. This, of course, depends on the diagnosed stage of associated conditions. Amelesians are certainly not able to do this ‘in the moment’ as we understand it, but they do remember – especially in the early stages of unmindfulness – complete events which encompass cause and effect. For example, people who lived during the second world war can recount vividly how their life, and that of their families and neighbours, was affected by the conditions resulting from bombing, rationing, and other war-time conditions. What they cannot do is apply those skills – linking and sequencing of events – to ‘this moment’, to the here and now. Though, I contend that in the early stages of Amelesia, they can.

Moral judgements

Also in the Buddhist tradition to be mindful means to bring to the moment the ability to make moral judgements based on one’s accumulated experiences of life. This requires the skills of remembering, paying attention and being aware of everything that has brought us to ‘this moment’ in order to say whether something is right or wrong. Amelesians are able to make moral judgements of what is happening to them here and now, even if they cannot express it. They react to people around them and the way they are treated. They will cry, in frustration, if they are spoken to in an offensive tone, if a look upsets them, if they are not listened to.

Modern and contemporary theories of mindfulness

(https://en.wikipedia.org/wiki/mindfulness)

Mindfulness is now almost a tour-de-force. I t has been adopted by many psychologists and educationalists as a tool for the development of focused attention of body and mind. It is considered an effective skill useful in all aspects of life, from keeping anxiety levels at a healthy level in order to function positively in every-day life, to preparing for examinations and other tests. Currently at the time of writing (Summer 2019) mindfulness, among many other theories and practices, includes:

1. present moment awareness (D S Black): give one’s complete attention to this moment’s experience
2. present-centred awareness (Bishop et alia): feelings and thoughts that come to our attention at any particular moment in our mind is accepted and not questioned
3. informal mindfulness (S F Hick): using mindfulness in everyday life
4. self-regulation of attention and orientation of experience in the present moment (Bishop, Lau et al 2004): to be aware of current experiences (self-regulation) and to be curious about what is exactly happening (orientation)
5. interaction between attention and peripheral awareness (J Yates Culasada): two discrete states in which one may be aware of things around them; i.e. there is a distinction between paying attention to something and being aware of something.

At low levels/early stages of Amelesia symptoms there are elements of all the above aspects. The proposed training programme (see pages A Communicative Approach to Conversations) suggests that with appropriate communication gambits it is possible to guide Amelesians to focus their attention on this moment’s events, on the here and now, no matter how brief the moment might be. However, anecdotal observation suggests that this attention is temporary. I suggest that the second of the above aspects – present centred awareness – is very much a feature of Amelesia. None of the Amelesians that I have encountered question their thoughts. In fact, they are convinced of their veracity and power that they get very agitated if contradicted. Amelesians are not able to use mindfulness in everyday life (theory 3 above). It is the fifth theory above: the suggestion that to be aware of something is quite separate from paying attention to it.

Mindfulness training – A conundrum

Could Amelesians benefit from mindfulness training? It is suggested that mindfulness training may slow down (or even prevent) early on-set damage to the brain associated with Alzheimer (see Wikipedia link above).

Current mindfulness programmes train the brain to focus on what is happening now at this moment in time, consequently clearing it of past memories or future plans. The paradox for Amelesians is that they do focus on this moment, they are not aware of past or future in the way a normal, undamaged brain. BUT, and this is a key BUT, but their present moment is to us a past reality. There is the conundrum.

The moment-to-moment theory of mindfulness seems to be the key of current thinking: ‘mindfulness means knowing directly what is going on inside and outside of ourselves, moment by moment’ (https://nhs.uk/conditions/stress-anxiety-depression/mindfulness). At low levels of brain damage symptoms, Amelesians know, they just know it in a different way. Their moment-by-moment is in the past, not as we know it to mean. We should say that they are not in the moment…in the present moment’ as we non-brain-damaged people understand a moment-to-moment. This NHS site quotes Professor M Williams:

‘This (mindfulness) lets us stand back from our thoughts and start to see their patterns. Gradually, we train ourselves to notice when our thoughts are taking over and realise that thoughts are simply “mental events” that do not have to control us’.

And this is the point: thoughts control the mental and physical life of people with Amelesia. It is as if thoughts become entities that come unbidden and unwanted. Perhaps the best description of the condition of Amelesia (unmindfulness) is this advice on the NHS website mentioned above:

Free yourself from the past and future….realise that, for several minutes, you have been trapped in reliving past problems or pre-living future worries

That’s exactly where Amelesians are: trapped in their past, reliving their past. Their future lies in needing reassurance that the people in their life – husband, daughter, grandson – might visit… take them home…not abandon them.

View and download “What is Amelesia – Unmindfulness” PDF

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About Mina Drever

My name is Mina Drever – thank you for visiting this website. I want us to reconceptualise what dementia is. To achieve this we need to do three things:

• abolish the word dementia
• adopt the word amelesia.
• learn to communicate with Amelesians

Once we realise what a dreadfully derogative word ‘dementia’ is, you will, like me, get quite angry.

Read more…

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¹ See www.nhs.uk/conditions/stress-anxiety-depression/mindfulness

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