Sep 07, 2018

Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression (Part 2)

Please ensure you have read the published Part 1 of this article, and have located the relevant appendices.

Definition of behavioural expression

Behavioural expression can 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 a desire to express underlying distress, often triggered by the interaction between the person living with dementia, the caregiver and the environment.’
Leah Bisiani 2010

It is often suggested that behavioural expression displayed by people living with dementia creates a disparate portion of the caregiving burden.

This observation has been seemingly recognised as the foremost concern for people living with dementia and their caregivers, dramatically impacting on the life quality of both.

In 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, and thus enable ourselves to use our own strengths and abilities, creativity and imagination, to capture life from their perspective.

It should be recommended that developing a person-centred model of care, taking into account the specific and distinct preferences of a person living with dementia, may enable us to provide a level of care that not only examines the personal choices of an individual, but also promotes an uplifting and joyous lifestyle that would more effectively provide a maximised quality of life.

This attitude enables us to look deeper into ourselves and realise that we do not have the right to push 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.

This arrogant perspective unfortunately creates situations, in which we lack insight into ‘our own behaviour’ when generating the stress related responses of others, when they may only be endeavouring to connect, and advise us we have it all wrong!

Behavioural expressions should only be considered problematic if the stress related responses:

  • Endanger the person living with dementia, or others
  • Are distressing for the person living with dementia
  • Interfere with the quality of care and provision of care for the person living with dementia
  • Require repeated intervention that creates chaos or despair
  • Require multiple pharmacological intervention

NB: Chemical restraint it NOT ever appropriate unless during extreme risk and as a last resort.

For a person living with dementia, having to function in a world of people who are cognitively aware, may not only become quite terrifying and intimidating at times, but be compounded by our disparaging attitudes.

This can then destroy all feelings of personhood and self-worth.

To consider it appropriate to treat people in an inferior manner because they live with dementia, is unacceptable, and extremely disrespectful of us, as cognitively aware people. We are essentially placing cruel biased beliefs onto an individual for being different.

It is crucial we comprehend that expecting a person living with dementia to function as a cognitively aware individual, is a grossly unfair expectancy on our part.

Can any of us really comprehend the reality of those who live every single day with dementia?

How would we feel if we lived in a world surrounded by others who tried to impose their beliefs, preferences and habits onto us?

How would we react?
Every single one of us needs to feel useful, special, unique, loved, cherished and worthy.

These desires do not disappear just because we are ageing or live with dementia – we are born with these requirements and we die with them.

If we eliminate these positive emotional states from the life of a person, through thoughtlessness and inattention, then immediately quality of life will be affected negatively.

We cannot continue disrespectfully devaluing another by demanding they adhere to our personal partialities.
Doing so refutes the relevance of others, stripping them of who they are and the integral place they hold within the world.

Furthermore, subjective terminology such as assuming a person “suffers” or “loses oneself” or is a “victim” or “afflicted” are also terms that are demeaning and derogatory, immediately providing a dehumanizing attitude based on “our” personal interpretations.

As does the term “challenging behavior”, “behaviors of concern” and “BPSD”.

This terminology is designed around condemnatory perceptions, hence when we intentionally describe behavioral expression in this discriminating manner, we are conceitedly proclaiming that ‘only’ people living with dementia exhibit behavior. Seriously???

Cognitively aware individuals, exhibit a plethora of stress related behaviors, more consistently, and dramatically, than people living with dementia.

What establishes our behavioral expression as considerably worse, is the “intent” behind our behavior.

We have definite insight into behaving in the very manner we pigeonhole others for!

This arguably poses the question of why we continue to judge a person who lives with dementia, on our own cognitively aware inadequacies?

Therefore, within the complicated domain of understanding behavioural expression in relation to the person living with dementia, we must:

  1. Understand the world through the eyes of the person and capture their perspective.
  2. Use our strengths, abilities, compassion and understanding to assist them at all times
  3. Be creative and imaginative
  4. Develop person-centred care models and maintain personhood
  5. Take into account and adhere to the specific and distinct preferences and choices of each individual
  6. Promote an uplifting and joyous lifestyle
  7. Maximise quality of life

Implementing these principles will help us to connect with people living with dementia within the moment, opening our heart to love and compassion, and providing companionship in a harsh world where they would otherwise be alone.

(Part 3 to follow)

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