Conclusion and Discussion

Has the aim of this training programme been achieved: have attitudes changed? Yes, in these participants, towards people diagnosed with low to medium levels of dementia-like symptoms (Appendix 6).

The participants’ knowledge about dementia increased exponentially: except for the care home manager, none of the visitors had known that dementia is the umbrella term for many different brain disorders; none of them knew that dementia means madness; all of them had accepted the given belief that people affected by all the various conditions under this term could no longer hold a meaningful conversation, because they experience difficulties in recalling events as we ‘normally’ do and are in a continuous state of confusion. All the participants felt more confident about talking with people with dementia than they thought possible after the face-to-face training programme – on a communicative approach to conversations with people diagnosed with dementia – and after the visits that followed this training.

All the participants found that by the end of the programme all the participants believed that people with brain damage caused by a number of diseases displaying similar symptoms such as poor memory and poor mental co-ordination are not mad, though they may be confused and may have no idea of past nor present. At the onset of their mental decline their mental agilities, in terms of memory recall and rational skills may be only mildly damaged. As this decline progresses they appear to live in a continuous present with little or 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 mental functioning by whatever disease ravaged their brains. 

It is possible to hold meaningful and sustained conversation with affected people by adjusting the way we use language: picking up cues from what they say, because these tell us ‘where’ they are at that particular point in time, and doing what with whom. Prompting them is also very effective as is the use of open ended referential questions (see the section The foreign and second language classroom for question types). These are questions to which the questioner genuinely does not know the answer. We unconsciously do this every day in our ‘normal’ interactions. When in the company of people displaying dementia-like symptoms this type of questions enables them to think for themselves and provide their own information that the questioner seeks. All we need to do is adjust the way we respond in the reciprocal exchange of information, by, for example, asking shorter questions and definitely not asking multiple questions. I fear we all fall into this trap!

All the participants deemed this training programme to have wider applicability with some small adjustments to its structure. As the quotes above (see Results section 1) all participants suggested that there may be a need across society – students, family and friends  – to acquire linguistic skills that would enable them to communicate in a more meaningful way with people affected by conditions which come under the umbrella of dementia.

The content of the programme was deemed appropriate: all participants would not change any of it, though the order of presentation of the content will be adjusted as per the suggestions made during the evaluation discussion that was held with the students and with the community visitor.

Amelesia can replace the word dementia – agreed all the participants – when describing 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 Body. These diseases have been conveniently grouped under the term dementia. But dementia itself is not a disease. The word dementia describes a mental state. But all the diseases categorised under this umbrella are caused by alterations in the physical circuitry of the brain. Dementia means ‘out of one’s mind’. If scientists cannot yet agree on where the mind is, and what it is exactly, why does the medical profession persist in attributing this term dementia to medical conditions with physical causation? If these people are not mad, and they are in a state of unmindfulness, it is time to stop using the term dementia as an umbrella term. Let’s us say these people are in a state of Amelesia. Ameles means unmindful in Greek. The suffix –esia means ‘the state of’. All the participants to this training programme agreed that this term would distigmatise the disease. The care home manager, Sue King, said:

I really love the wording chosen instead of using dementia. Amelesia is a much kinder word. It would be lovely to use it world-wide and stop the stigma associated with dementia.

Destigmatize = to remove associations of shame or disgrace from mental illness ¹

This will not happen until the word dementia is removed. A great deal of work has been and is being carried out by governments (for example The Department of Health and Social Care in England with The Dementia Challenge ² ) and charitable bodies (for example The Alzheimer’s Society) and many other organisations (for example The Butterfly movement by David Sheard ³ ) to remove or reduce stigma associated with dementia. But it persists. I suggest that stigma will persist until we stop saying that this or that person has dementia. ‘Living with dementia’ does not do it. Any permutation does not do it. Informal and undocumented observation from working as a volunteer in Redbond Lodge care home suggest to me that we react differently if we are told that someone ‘has Alzheimer’s’ to being told that someone else ‘has dementia’. I would suggest that this observation is supported by findings in studies carried out by Chan and Donovan (2005), Jason and Taylor (2002), Petrie et al (2017). All these studies found that professional attitudes towards diseases change, when they are described with more precise medical terms.

Amelesia – a new name

If we, in the future, do not wish to be seen as mad, if we want people around us to speak to us in such a way that what we say is not dismissed as the meandering of a person who does not know what he or she is talking about, we must change our attitudes. We must adopt linguistic tools which may be effective in sustaining meaningful dialogue between the affected and the non-affected, as suggested by the results of this pilot. But first of all we must cease to use the word dementia to describe a way of seeing the world in this disconnected way. The participants to this study support the adoption of the term Amelesia because it describes accurately the absence of the mind in the present moment, the unmindfulness. Scientists and the medical profession acknowledges that the term dementia is ‘pejorative’ and ‘harmful’ (Jellinger, 2010) yet struggle to find a generic term for this syndrome. It is especially imperative to find a word for the general public because medically the word dementia currently describes many different disorders, some of which ‘may be reversible if the correct diagnosis of the cause ia made and treated (Jellinger, 2010).

Who is the programme for?

This pilot training has been designed with young sixth form students in mind because they are the catalysts for change. Change is a generational phenomenon. The young people of today will be tomorrow’s doctors and nurses, plumbers and electricians, beauty advisers and psychotherapists. They will all, in a personal or professional capacity, know someone or work with a person who will be affected by this condition. This training can be incorporated into community services programmes undertaken by sixth form students, or as part of their PSHE (Personal Social and Health Education) studies, or the Duke of Edinburgh Awards system, or as part of the National Citizen Service: however the school wishes to adapt it. The deputy head of Felsted schools suggests, in her evaluation of the programme, that it be devolved exactly as it is, to Year 12 students, with six weekly visits by students to residents in care homes, with formalised post-visits reflections and the face-to-face-training. She said that her students had gained ‘a greater understanding of some of the challenges facing elderly people’. In addition the programme had ‘developed their empathy and communication skills’. She did warn, however, that it requires careful planning, especially the timing of the visits and transportation of students to the care home.

The communicative approach in this programme has a place as a module in existing carers’ dementia training programmes to enhance their communicative skills. There are numerous training programmes available on dementia, to suit individual requirements and motivations. The providers of such courses might wish to incorporate this communicative approach because it provides a different philosophy to existing dogmas towards interacting with people diagnosed with dementia-like symptoms:

• there is a whole person in front of us; it is up to us to find that person
• we can communicate effectively by adjusting the way we use language
• people diagnosed with dementia are not mad: they are in a state of unmindfulness

The idea of the ‘whole person’ is not new. Many an organisation working tirelessly to change attitudes suggest (notably David Sheard with his Butterfly Movement, see note 15) that we must seek to find the person that was/had been before the onset of this kind of mental disability. Tom Kitwood’s (1997) model of person-centred dementia care has been universally adopted across care provisions and forms the core of current training programmes for care planning. However, commenting on progress made by this widespread adoption of the Kitwood model Professor Dawn Brooker (2019) says that, whist ‘everything changes’ it is frustrating to see that ‘everything stays the same ⁴.  This study suggests that we need to take a few lateral steps: the whole person is still there, but it presents itself in segmentedform at different times in different contexts, just as we do in ‘normal’ interactions. If we think about it, we are not always angry, sometimes we smile, at others we frown, sometimes we yell at other times we quietly contemplate. Why should this be different when we lose the rational ability to control our emotions? In our interactions with people affected by dementia-type symptoms we may be in the presence of an ’upset me’ one moment and a ‘frustrated me’ the next: from instant to instant we need to tune into that unmindful brain skipping in a never-ending dance of cinematic images appearing in our brain as a continuous film shot.

Ultimately, the programme is for everybody as suggests the community visitor who participated in the programme (in answer to questionnaire questions 3.7a, 3.8a and 3.9a):

Yes …(she’d recommend it to) relatives and friends of people who are living with dementia, community workers or artists who want to work with people living with dementia.

(because it) would improve conversational skills; I suspect that there are many training courses on what dementia is and how to look after people, but this training has the potential to offer practical approaches to understanding how better to communicate with others and to reflect on these skills.

Enhancing existing programmes

The communicative approach written in the training programme that I propose will enhance the strength based language used by WHELD. A number of academics found the WHELD (Improving Well-being and Health for people with Dementia) programme to be effective in reducing agitation.  (Ballard, C. et al. 2018).

A study published in The British Journal of Psychiatry (Thompson et al., 2016. ) also suggests that some types of questions are more effective than others in dialogues between patients and their doctors.

A call for the use of accurate language in medical diagnosis was made in a paper by two doctors working in Australia (Chan & Donovan, 2005) in order to influence appropriate response, medically and socially:

references

‘In clinical medicine, establishing case definitions for diseases … is often an inexact and arbitrary exercise. The definition is affected by the intended purpose, be it for disease surveillance, clinical care, service provision, research or funding exercises. A case must be defined precisely in order to monitor (the) disease … and evaluate the effectiveness of interventions’.

¹ https://www.merriam-webster.com

² Set up in 2012 www.gov.uk

³ www.dementiacarematters.com

⁴ www.journalofdementiacare.co.uk (07/12/2018 issue)