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Challenging the Behavioral Paradigm - The Right to Express Yourself:

Updated: Aug 4, 2018

by Leah Bisiani creator of Uplifting Dementia

Martin Luther King:

“ People don’t get along because they fear

each other. People fear each other because

they don’t know each other. They don’t

know each other because they have not

properly communicated with each other”.

Stereotypes based on assumptions become part of how we think, how we believe others should act at certain times of their life and how we believe a person must behave (Angus & Reeve, 2006). Kitwood (1997) likewise believed we should not judge people living with dementia in relation to how we think a person should behave. Dementia may well challenge us as care partners because of the fundamental complexity of the condition, however, within the complicated domain of understanding behavioural and stress related responses, it may be considered more beneficial to appreciate the world through the eyes of the person living with dementia.

This consequently may enable us to utilise our own strengths and abilities, to capture life from their perspective, without the judgmental labels and attitudes that we as cognitive aware individuals, tend to place upon them. To care for a person living with dementia in a respectful and dignified manner, to enable them to continue living life as they know it, requires a major conversion of 'our' inner fears and impressions associated with dementia.

Pessimistic attitudes continue to be biased. Subjective terminology such as assuming a

person "suffers", “is a burden”, "loses oneself”, is a "victim" or "afflicted", are terms that are demeaning and derogatory, immediately providing a dehumanising attitude based on our cognitive personal opinions. As are the terms "challenging behaviour", "behaviours of concern" and "BPSD". These depictions intentionally describe behavioural expression in a manner clearly proclaiming that 'only' people living with dementia exhibit behaviour, people living with dementia are challenging ‘us’, and misleadingly, making an untrue declaration, that behaviour, psychiatric conditions and dementia are co-joined.

Aligning dementia to mental health through a classification such as BPSD, is an error in judgement related to categorisation. It appears this has arisen because of uncertainty within a health framework founded purely on symptoms that only ‘seem’ to have at times, ‘some’ commonality.

It is essential we advocate for dementia to be recategorized within a disability paradigm now that we are more knowledgeable. The past may have been mental health, but the future requires reform to adequately represent the experience of people living with dementia. This will promote and support a more enabling approach and assist in change regarding societal stereotypical attitudes towards behaviour and dementia, and cease boxing people for the sake of expediency. It is clear these invalidating and caustic typecasts, do not reflect the actuality of behaviour nor dementia.

The Power of Destructive Language

Further discernments regarding behavioural expression are habitually based on archaic, ageist, and negative stereotypes. Many people within the community, inclusive of medical professionals, critic people who live with dementia, based on biased cognitive viewpoints, and one-sided recommendations that a person is ‘misbehaving’, ‘inappropriate’, ‘problematic’, ‘attention seeking’, or ‘disruptive’. These imageries are essentially supplementary prejudicial assumptions, and are incorrect and inappropriate.

We should instead consider that behaviour is a response to feeling devalued, unmet need essential to that person’s life being ignored, and/or frustration due to inability to verbalise this effectively. Accordingly, it seems it is we who are not delivering, and are the catalysts to creating the stigma connected to behaviour and dementia. The fault directly lays with our behaviour in generating this attitude. Ignoring the actual triggers for behaviour, neglects the needs of people living with dementia and often results in negative consequences (Killick & Allan, 2001).

Behavioural expression therefore could be avoided in many cases, and could be defined as:

‘behaviour of such intensity, regularity and extent that the physical welfare of a person and others may be placed or is likely to be placed in serious danger. It is necessary to perceive behavioural expression in relation to the person, the possibility that needs are not being met, as well as the subsequent frustration in loss of ability in being able to effectively communicate those needs. The concept of behavioural expression has come to be viewed less as a problem, and more as communication, or an expression of desire, or underlying distress, often triggered by the interaction between the person living with dementia, the care partner and the environment’.

(Bisiani 2010).

Learning to Embrace Another Language

As practitioners, we can make erroneous choices for people living with dementia by allowing our prejudices to take precedence, thereby misrepresenting their sense of personal and individual characteristics and needs (Killick & Allan, 2001). By adjusting ourselves, we may effectively meet the specific and distinct needs of those being cared for, thus value and honour their personhood, uphold the place they hold within the world, and maximize their quality of life. This attitude enables us to look deeper into ourselves and realise that we do not have the right to thrust our own personal subjective choices onto another, as this effectively negates the importance and relevance of that person’s civil liberties, stripping them of their personhood and the place they hold in the world.

Furthermore, Sifton (2004), suggests that, as caregivers, we cannot expect the person with dementia to try any harder. Indeed!

Instead, it is recommended we appreciate and comprehend what a person is endeavouring to communicate, why they are trying to communicate a specific issue, and how we can resolve it with them, as a “partnership”, together. Goldsmith (1996) likewise advises that we need to be willing to cross the threshold into the world of people living with dementia, with all its confines and limitations, instead of expecting them to act within ours. Those that care for people living with dementia can, at times, struggle with this aspect of flexibility.

The person who lives with dementia exists in a world in which it is a privilege for us to share, and they can provide us with the insight and inspiration to become a better version of ourselves, just simply by "understanding”. When endeavouring to fathom the world of a person living with dementia we should attempt to capture their conflicting perspectives and scrutinise the understanding of what we perceive. Hence, we may recognize, and attempt to upkeep each person’s reality as their own ‘personal truth’ (Patton, 2002).

If we truly ‘listen’ to the behaviour of a person living with dementia, it is possible to understand their methods of communicating, thus open a new world between those attempting to connect.

Respecting someone and upholding their dignity involves honouring their individuality and intricacy, their preferences and choices, their need for control over facets of their lives, and always respecting the necessity to have those selections and partialities considered and provided (Killick & Allan, 2001). Dehumanizing and disrespecting others by not providing choice, may create an environment in which that person may feel isolated within their reality, with no means to communicate their needs and preferences.

Furthermore, it is possible this generates situations in which care needs may be assumed and the rights of the person living with dementia ignored. This can appear to people living with dementia, as a total disregard of their personal choices.