Updated: Aug 18, 2018
By Contributor Leah Bisiani MHlthSc/RN.1/Dementia Consultant © Uplifting Dementia
It is our pleasure to announce the beginning of our Guest Contributor Blogs. Through the beauty that is social media networking, we have been able to meet many wonderful people who are experts in their fields within the aging community who we may not have otherwise had the chance to meet. On Instagram, for example, we have been following people from all over the world who contribute in positive and innovative ways to elder care, aging research, and in this case; to Dementia and Alzheimer's awareness. Our Guest Blogger this month is Leah Bisiani MHlthSc, RN.1 and Dementia Consultant. We will be thankful to Instagram for introducing us to Leah (@uplifting_dementia), who is reaching us all the way from Australia with an impressive background and a wealth of knowledge.
"Turning the world on its axis – Only the perspective of the person living with dementia can illuminate our viewpoint."
Dementia may challenge us as caregivers 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. Let us contemplate their perspective, without the judgmental labels and attitudes that we as cognitive aware individuals, tend to place upon them.
We are very quick to make these verdicts, based on our purely cognitive viewpoints, without even considering the person living with dementia as being the only true experts.
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. Instead, maybe we should examine and encourage intensified awareness of the specific rights and needs of those who live every day with this condition.
By supporting and empowering caregivers, it is hoped this contributes to viewing the caregiving journey more positively, thus enhance the life of people living with dementia.
Knowledge, guidance and support is without a doubt, crucial in providing us with the ability to visualise the destructive impact we may have, by continuing the fostering of negative perceptions, and fear, towards dementia and those that live with it.
Subjective terminology such as assuming a person "suffers" or "loses oneself" or is a "victim" or "afflicted" are terms that are demeaning & derogatory, immediately providing a dehumanising attitude based on "our" personal views.
As does the term "challenging behaviour" or "behaviours of concern" and even "BPSD".
These terms again are labels, and when we intentionally describe behavioural expression in this unfair manner, we are arrogantly proclaiming that 'only' people living with dementia exhibit behaviour. Seriously???
Cognitively aware people, in fact, exhibit a plethora of stress related behaviours, more consistently, and dramatically, than people living with dementia.
What establishes our behavioural expression as considerably worse, is the "intent" behind our behaviour. We have definite insight into behaving in the very manner we pigeonhole others for. How grossly unfair. This arguably poses the question of why we continue to judge a person who lives with dementia, on our own cognitively aware inadequacies.
Instead, let us lead by example, understanding each condition/s, viewing the person instead of the dementia, providing empathy and compassion, thus preclude medical professionals and the informal caregiver from struggling with these malignant, stereotypical, archaic, negative beliefs. These invalidating and caustic terms do not actually reflect the often positive, and wonderful lifestyle that can be attained by a person living with dementia and their families.
I am not negating that living with dementia must be formidable and often confronting. People living with dementia are courageous and inspiring in their fortitude. We cannot imagine the fight they embrace within, every moment of every day.
What I believe is, it is we who are the catalysts to creating the stigma attached to this condition, and the fault lays with us for generating this attitude. For all it does is increase the pressure and strain on the person living with dementia.
By adjusting ourselves, we may effectively meet the specific and individual 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.
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.
This would then provide increased possibilities to enable them to live a life free of the constraints that society place upon people that are different.
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, or to be feared, must cause despair, core suffering or sadness. This is a destructive and harmful myth fostered by constant reinforcement by the media, and/or those that have only received inadequate information. It has unfortunately bred a continuation of ignorance, 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 dementia and those that live with dementia, therefore instilling the harrowing terror & pessimistic mindset, that we then, at times prejudicially pass on to those we care for.
Imagine what a more positive belief may create?? Imagine focusing on a person’s strengths instead of their weakness.
Imagine creating an environment in which every moment is so positive, that life is just as delightful as ours, it is just different!!!!!!
Information is crucial in building the foundations required in the understanding of the individual actuality of each person living with dementia.
Consequently, it is vital for aged care professionals, the informal caregiver and our community to change our view, turn the information we have been given on its axis, and finally, respectfully, understand the reality of people living with dementia. Then we can truly appreciate the person as a whole and avoid disabling them.
Empathy, compassion, creativity, flexibility and working from the heart is the essence of true caregiving.
To demonstrate our ability to perceive life through the eyes of another, to feel what they feel, to experience their realty with them, enables us to then enhance their life, converting ill-being to wellbeing, preserve personhood and self-worth, and retain the joy and the spark we all desire within our life experience.
This enlightened interpretation additionally benefits the caregiver, delivering the hope required for them to persevere, in an area where they are 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 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 privileged enough to be invited, thus provide them with the companionship they deserve in a world where they would otherwise be alone.
Reneu Health, Inc. will be continuing our Guest Contributor Blogs in the upcoming months and will be introducing you to many others from around the globe, as well as revisiting Leah from time to time to gather more of her pearls of wisdom.
We hope you have enjoyed this thoughtful & compassionate blog from Leah Biriani MHlthSc, RN.1 and Dementia Consultant. Please read below for her impressive