Turning the world on its axis – only the perspective of the person living with dementia can illuminate our viewpoint byLeah Bisiani MHlthSc., DipBus., RN.1., Dementia Consultant

Reprinted with kind permission

Togetherness and altruism:
Dementia may challenge us as care partners because of the fundamental complexity of the condition, however it
is time we regain our focus, first and foremost, and look towards the person living with dementia, instead of our
habitually, self-indulgent tendency to create situations that are all about ‘us’.
Caring for another could potentially be viewed as a true partnership between two people, and without a doubt,
each person deserves equal amounts of support, guidance and understanding.
Caregiving is likewise not a sole journey, for if it is viewed as such, then this can generate a ‘them’ and ‘us’
scenario, overlooking the importance of both.
The gift of life is not singular nor a one-way path.
Many of us will have the opportunity and honour that comes with caring for one another during our joined lifespan
with others.
This is not a time to bemoan who is worse off or most affected by the hand life deals us, because then a victim
mentality can insidiously prosper, provoke negativity, disturb relationships and cause resentment.
This is not a positive state of affairs for a care partner to experience nor the person who requires care.
Making a difference and caring for each other might even be considered the ultimate gift we can bestow upon
one another.
By supporting and empowering care partners, it is hoped this contributes to viewing the caregiving journey more
positively, thus enhance the life of both the care partner and the person living with dementia.
Stifling the stigma:
To care for a person living with dementia in a respectful and dignified manner, it is essential we ensure they continue living life as they know it
This requires a major conversion of ‘our’ inner fears and impressions associated with dementia and those who live with dementia.
We should examine and encourage an intensified awareness regarding the specific rights and needs of those who live every day with this condition.
It has become apparent that a major adjustment related to mindfulness is required urgently, in regard to presumed and false information about dementia.
Thus, it is time we illuminate humanity’s misconceptions surrounding dementia and revolutionise a major transformation in attitude, that defies and stamps out the dark cloud and negative culture that has been disseminated throughout most of humanity.
Increased knowledge, direction and support is without a doubt, crucial in providing us all with the ability to visualise the destructive impact we have so thoughtlessly created, by the continuation of, and fostering of, negative perceptions and fear.
Lose the labels:
Let us contemplate how crucial it is that we promote consistent, inclusive and non-stigmatising terminology when we discuss, talk to, or talk about people living with dementia, so we may create an ethos that does not demonise people simply for having a condition that is associated with cognitive changes.
It has become obvious that some terms and attitudes used flippantly and causally, frequently have a profound impact on how a person living with dementia perceives themselves and how others perceive dementia.
These labels extinguish non-biased perspectives which is then articulated into prejudice.
Our society must remove their blinkers and rigid ideals, so they may enable people living with dementia to live their life without the judgmental stereotype that we as cognitive aware individuals, tend to place upon them.
We are very quick to brand people with these despicable verdicts, based on our so called ‘intellectual viewpoints’, without even considering that people living with dementia are ‘the only true experts’.
Their personal truth is the ONLY truth. It is moreover the ONLY truth that matters.
Subjective terminology such as assuming a person “suffers”, is a ‘patient”, “loses oneself” is a “victim” or is “afflicted”, are terms that are demeaning and derogatory, immediately providing a dehumanising attitude based on “our” bigoted assumptions and personal views.
As do the terms “challenging behaviour”, “behaviours of concern”, “changed behaviour”, and the most invalidating of all, “BPSD”, (behavioural and psychological symptoms of dementia).
These terms are prejudicial labels, and when we intentionally describe behavioural expression in this discriminating manner, we are conceitedly proclaiming that ‘only’ people living with dementia exhibit behaviour. Seriously???
Furthermore, we are developing a false mindset that states dementia is recognized as only part of the mental health paradigm, thus erroneously categorising dementia as a psychological condition instead of a disability.
Every human being who exists in this world, who may or may not live life with or without psychological or cognitive changes, all exhibit a plethora of stress related behaviours and responses.
Cognitively aware individuals display behavioural expression just as consistently, and often more dramatically, than people living with dementia.
What establishes ‘our’ behavioural expression as considerably worse, is the ‘intent’ behind our stress related responses to everyday life occurrences.
We have a definite insight into behaving in the very manner we pigeonhole and berate people living with dementia for.
How grossly unfair and disgustingly arrogant of us.
This arguably poses the question as to why we continue to judge a person who lives with dementia, based on our own callous cognitively aware inadequacies??
These invalidating and caustic terms do not actually even reflect the often positive, and wonderful lifestyle that can be attained by a person living with dementia.
I am not negating in any way that living with dementia must correspondingly be quite formidable and often confronting at times.
The ability of people living with dementia to stoically move forward despite the hurdles we place in front if them, just reinforces how incredibly courageous and inspiring they are in their fortitude.
Regulate arrogance and attitude:
What I believe is, it is we who are the catalysts to creating the suffering and stigma attached to this condition, and the fault lays with us for generating this attitude.
For all we have done for numerous years, is intensify the pressure and strain people with dementia have to live with every moment of every day, through our ignorance and lack of compassion.
Just because living with dementia is viewed as ‘different’ to what we ‘expect’ at this time of life, does not mean we should assume or conclude it is wrong, to be feared, must cause despair, or produce core suffering and sadness.
This is a destructive and harmful myth fostered by unending constant reinforcement by the media, idiosyncratic guesswork, and/or information passed on by those that have received inadequate information.
It has unfortunately bred a continuance of obliviousness, misunderstanding and misrepresentation throughout most of humanity.
Thus, fear is born.
Hence, I again reinforce that these attitudes are frequently the impetus in creating inaccurate perceptions about the condition known as dementia and those that live with dementia, therefore instilling the harrowing terror and pessimistic mindset, that we then, at times prejudicially pass on to those we care for.
A new era of awakening:
By adjusting ourselves, we may effectively meet the specific needs of any person living with dementia, thus value and respect each individual’s personhood and uniqueness, uphold the place they hold within the world, and maximize their quality of life.
“It could be assumed that many people living with dementia may, if they could communicate it, have the belief, trust and faith in those caring for them, to continually persist in searching for fresh and innovative methods of creating preservation of ability, and enabling self-expression”. (Leah Bisiani, 2010)
This attitude would then provide increased possibilities that empower people living with dementia to live a life free of the overwhelming constraints that society place upon people that are dissimilar.
Instead, let us lead by example, understanding each condition/s based on the individual who lives with it, view the person instead of the dementia, and provide a developed level of empathy, so we can then honour the true essence of what it means to care.
Imagine what a more positive belief may create??
Imagine focusing on a person’s strengths instead of their weakness.
Imagine creating an environment for any person, in which every moment is so positive, that life is just as enchanting, magical and delightful as the life we all innately crave as individuals in our own right?
It may not be what ‘we’ perceive a person ‘should’ have but linking into embracing the fundamental right of every person to have what ‘they’ desire and deserve.
Afterall, are we not all a product of our own life transitions?
Do we not all base our life entirety on our own developed preferences and choices?
Wouldn’t we ‘all’ expect this to be upheld and appreciated, so we may continue life as ‘we’ know it?
Empathy, compassion, creativity, flexibility and reverence is the shining heart of true care.
Share the knowledge:
Information is crucial in building the foundations required in understanding the individual actuality of each person living with dementia.
Consequently, it is vital for aged care professionals, the informal care partner, and our community to change our views, turn the information we have been given on its axis, and finally, respectfully, understand the reality of people living with dementia.
This altered perception may be the transformation required to preclude society as a whole, from judging, viewing, and continuing the disparaging attitudes and labels that continue to influence malignant, stereotypical, archaic, negative beliefs about people who live with dementia.
To demonstrate our ability in perceiving life through the eyes of another, to feel what they feel, to experience their realty with them, enables us to then potentially enhance their life, converting ill-being to wellbeing, and preserving self-image and self-worth.
Why not be the person who assists another to retain the essential joy, freedom and happiness that we all crave and require, to continue our personal life experience.
This enlightened interpretation additionally may benefit the care partner, delivering the hope required for them to persevere, in an area where they are also conditioned to only feel misery.
The person who lives with dementia exists in a world in which it is a privilege for us to share, and only they can provide us with the insight and inspiration to become a better version of ourselves, just simply by “understanding”.
Let us enter that reality, if we are fortunate enough to be invited, thus provide them with the companionship they deserve in a world where they would otherwise be alone.
© Leah Bisiani MHlthSc/RN.1/Dementia Consultant – Uplifting Dementia