Rationale – What is dementia?

Dementia is not a condition such as epilepsy, or arthritis, or Parkinson’s, or Crohn’s. Dementia is simply a label, a one-word label that describes a number of conditions with common symptoms. These common symptoms include various degrees of forgetfulness, confusion, poor, or lack of, rational thinking, inability to sequence and plan an event such as cooking. The medical definition² of dementia suggests that, whilst it affects the ability to perform in rational ways, it does not take away the sense of awareness and consciousness. In other words, when we³ are affected by this condition, we are no longer able to think and behave as we do before its onset, because our brain’s ability to string words and events together in a chronological and logical manner will have been impaired. When ability is impaired, it becomes a disability. Disability is not madness. It is not ‘raving⁴.’

This label ‘dementia’ has done untold damage, psychologically and culturally over a number of generations. It has disempowered families, friends, and professionals, of the skills to adapt, linguistically and emotionally. More importantly, dementia is the most insulting of terms. 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.

A new name: Amelesia

Why is ‘Amelesia’ a better word for medical conditions with symptoms currently categorised under the umbrella term ‘dementia’? Amelesia = unmindfulness – Dementia = madness

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.

Unmindfulness is the opposite of mindfulness. 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 mindfulness⁵ are many and 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. Mindfulness is ‘deliberately paying attention to the present moment’ (Arnold, 2016). To be mindful in this sense, means a) to distinguish between what is good for one’s wellbeing – at a particular moment in time – and what is not good; and b), to be able to calm the mind once this distinction has been made in order to free it from the tangled web of thoughts and emotions in which it may be trapped (Williams and Pennan, 2011). If we give a superficial glance at some of the interpretation of this original proposition we will see that people affected by symptoms associated with diseases such as Alzheimer – disorientation, confusion, fear, anxiety, anger – do not display 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!). An interpretation of the play Still Alice⁶ – adapted from the novel Still Alice by Lisa Genova (2007) – has the central character Alice, who is trying to come to terms with a diagnosis of early on-set Alzheimer’s, accompanied, shadowed really, by her non-Alzheimer self – Herself – her mindful self, her ‘mindfulness’ (Grindley, 2018).

Changing the names of a disease because of stigmas attached to certain terms is nothing new or unusual. In fact it is a desirable thing to do in order to influence medical treatments and policies in some cases which carry a disproportionate degree of bias, such as, for instance, gout (Petrie et al., 2017). This study found that by changing the name of the disease gout and referring to it by its medical term was instrumental in destigmatising the condition, both medically and in the public perception of the disease. Similar attitudinal changes were found among medical students who viewed a disease more seriously when a medical term was attached to it – Myalgic Encephalopathy (ME) – rather than the more common label Chronic Fatigue Syndrome (Jason and Taylor, 2002). In general parlance we no longer use terms such as hypochondria or manic depression, respectively known now as health anxiety and bipolar disorder. Spastic and crippled have been delegated to archaic dictionaries and handicapped people are more respectfully referred to as disabled.

Why a communicative approach?

The central thesis of this pilot training programme is that attitudes will change if we change the way we communicate with people affected by cognitive impairment and if we adapt our language to their new way of seeing the world. By asking the right questions, by listening carefully to what the other person is saying we pick up cues. We build on those cues. We give prompts and we change words and phrases to make our meanings clearer. We refer to real people and real events. All these interactional strategies are at the centre of the communicative approach to this training programme.

The communicative approach has a long and well-established place in theories of language teaching and learning, since it was developed in the 1970s by the linguists Hymes (1971) and Halliday (1975). It is widely used around the world in classes of all ages for second and foreign language learning. It is the approach used by the British Council ⁷  in every country in which it provides teachers of English as a second or foreign language.

This pilot training programme encompasses key teaching and learning strategies of the communicative approach to conversational interactions: games, problem solving tasks, role plays, group work, sharing opinions, scaffolding and a linguistic underpinning of question formation. It draws on real experiences of the people involved in the interactions. Its central tenet is placing learner-speakers of a second/foreign language in real situational context in which appropriate and specific language must be used. For example, when visiting a doctor and one student pretending to be the doctor asking relevant questions whilst another student plays the role of the patient responding appropriately to the doctor’s enquiries. In this training programme participants are asked to imagine themselves as people diagnosed with dementia-like symptoms and as ‘normal’ visitors, before and after learning linguistic conversational gambits that lead to sustained dialogue.

The memoir: a primary source for the pilot training programme

I wrote Thank you lady in order to make sense of the way people interacted with my mother, Angela, during her ‘dementia’ years. Whilst writing the memoir I was struck by a number of ways in which Angela revealed her grasp on the events and people that linked her present to her past. In other words, Angela knew who she was, always, and she knew the people who had populated her life, in Italy and in England, in the past and in the present. She remembered events and situations with clarity and accuracy. What was different were the processes and the sequences involved in these recollections. She was no longer able to identify the correct location in time and space of when events took place. There seemed to be a fusion of time and space and a clouding of details.

By carrying out a thematic text-analysis (Guest et al, 2012) of the conversations and interactions in the memoir, between Angela and people around her, I was able to identify evidence for this position that dementia does not kill the person afflicted. Rather dementia accentuates certain traits more than others in different contexts. We can’t talk about different times and spaces. In the mind affected by dementia time and space seem to fuse. It’s almost like time and space described in astro-physical terms. The past and the future do not exist in discrete terms. Rather, they appear to become fused into an ‘extended present’ (Rovelli, 2017). Rovelli explains Einstein’s theory 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’ (Rovelli, 2017, page 53-54). Is this how the mind affected by this condition sees one’s life? As a continuous experience rather than a sequence of events, some of which happened in some other dimension the same mind can no longer identify?

In the case of Angela, as suggested in the memoir, events seem to be recalled as cinematic snapshots, as complete events. Angela during her dementia years was unable to make sequential and rational sense of her present. Her mind had lost the ability to function on normal tracks. So she could no longer prepare a meal because she no longer was able to decide what comes first, and second, and third in the sequence of preparing a meal. But she knew that her life had centred around caring for her family, her husband and her children and part of that caring was to prepare meals. That is why throughout her dementia years, as shown in the memoir, Angela kept going on about the need to go home and prepare dinner. She could no longer do it physically, but it had been a core part of her life. This observation led me to conclude that the whole person that Angela had been was still present in her mind, but a segmented version of her person presented itself during her dementia years. The appearance of the segmented person would originate in the past moments she was reliving in her mind, in the time and space of that moment. This phenomenon was most evidenced by Angela’s unique and discrete relationship she had had with each of her children. This continued to be the same throughout her dementia years.

The foreign and second language classroom:

Drawing on literature research carried out in classrooms across the world from the 1970s (Drever 2001) onwards and on my own experience as a second and foreign language teacher I was able to demonstrate to this project’s participants that it is possible to use conversational patterns that allow for two-way conversations to take place with people affected by dementia. In the second and foreign language classroom learners are encouraged to speak when they have to respond to questions which ask for specific information. In the context of these classrooms this is called ‘uptake’, that is when learners have understood the question and attempt to give appropriate answer. In the case of the topic being studied in this pilot project we talked about ‘sustained dialogue’, that is, how do we, as visitors, ask the right questions in order to enable a dialogue between us and a person with dementia-like symptoms to sustain a dialogue beyond the yes and the no. We looked at eight different types of questions which prevail in second and foreign language learning contexts and how they are generally used, to what purpose:

Extracts from the memoir Thank you lady were read to the participants as examples of where these types of questions were used and to what effect. In this memoir three types of questions led to the person with dementia-like symptoms – Angela – engaging in a longer dialogue, often sustained over some verbal distance. Interestingly, even the yes/no questions often led Angela to make unasked-for expansions, clarifications to her answers and spontaneous contributions of extra information. However, the questions that always led to Angela’s uptake, and consequently to longer dialogue between her and her visitor, were referential questions, those to which the visitor genuinely did not know the answer. Of all questions asked in the whole memoir, these accounted for 33.5% . Display questions – those to which a visitor knows the answer – also led to uptake. These were used 10% of the time in all the dialogues. The most asked questions were yes/no questions, at 36.5% of all questions.

² www.medical-dictionary.thefreedictionary.com ‘Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasts more than six months, not present since birth, and not associated with a loss or alteration of consciousness’

³ ‘We’ is used in this paper as an all-inclusive address to everyone reading it.

⁴ www.etymology.com

⁵ A comprehensive summary on mindfulness can be found in wikipedia.org with suggested reading and on www.nhs.uk

⁶ The novel Still Alice was adapted into a play by Christine Mary Dunford, keeping its original title, in 2013, at the Lookingglass Theatre in Chicago. The 2018 production was staged at the Cambridge Arts Theatre.

⁷ www.britishcouncil.org.eg/en/basics-communicative-lang

⁸ Open questions are characterised by starters such as: who, when, why, how, what, which