This article is Part 1 in a series of 5 instalments.

By Leah Bisiani, MHlthSc/Dip Bus/Dementia and Aged Care Consultant/RN.1.

Empathy is…
seeing with the eyes of another,
listening with the ears of another
and feeling with the heart of another”

Alfred Adler 

An ageing population and living with dementia

Our ageing population is rapidly increasing globally, yet within the last 25 years it has become sadly and increasingly evident that the majority of our younger generation are responding to this change in generational dynamic by withdrawing and limiting positive connection and exchanges with the older generation. 

This is subsequently creating segregation between age groups, a sub division within human kind, and clearly exposes evidence of a cumulative, destructive lack of consideration towards our elder population. 

This unfortunate attitude is creating a disturbing foundation instituted upon disrespecting and dishonouring those who have lived prior to us, and of whom have fought for our future. 

“Caring for our seniors is perhaps the greatest responsibility we have. Those who walked before us have given us so much and made possible the life we enjoy.” 

John Hoeven 

Evolution ensures each generation survives a lengthier existence. 

This is partially due to ongoing progressive change as the populace adapts to the environment, inclusive of the substantial impact of modern medicine. 

Older age may be challenging to us all, however, it may conversely be viewed as the most valuable chapter of the entire life experience. 

Enabling and supporting our senior population by embracing and respecting age, may potentially create opportunities to heighten influence towards positive transformations in what may seem quite a callous mindset by many in our community. 

This in turn may convert current societal stereotypical attitudes from evolving, based on impressions about ageing that at times plague many of us, and instead promote a sense of expectation and liberation. 

It is critical we respond to the needs of our older community by committing to the development of initiatives that strive to meet the diverse requirements of this age group. 

Adequate frameworks are essential in ensuring our older populace are provided with the necessary respect and reverence, to continue ‘living well’, to uphold and promote ‘ageing well’ and endorse ‘healthy ageing’. 

Consumer directed care is a basic human right and encourages intensified awareness of the specific requirements of each person, acknowledging the preeminent need to cater for individualised care. 

Healthy ageing approaches should permit a senior person to articulate awareness of their necessities, discuss their fears, thus helping us to develop interventions that allow participation in choice and decision making, equipping all of us, together, to face the future as one. 

It must be projected that the compelling factor here is, ‘going without should not be an option’. 

Advocating a solution and providing a supportive community may well be the catalyst to our seniors living with a greater sense of contentment, pleasure and exuberance, as opposed to a sense of bleakness and ill being. 

It is paramount that we highlight what are considered the principal necessities for each older individual to continue living a fulfilling, stimulating, caring and reverential existence. 

The objective should be to provide enhanced opportunities to facilitate the reality of the ‘golden years’. 

***

Dementia may challenge us all, because of the fundamental complexity of the condition, however it is time we regain our focus, first and foremost, and behold life through the eyes of the person living with dementia. 

Habitually, our lack of human decency, bred by prejudicial assumptions regarding dementia, affect how we treat people, thus depriving them of basic biopsychosocial needs, such as compassion and empathy. 

Our own subjective conjectures and ignorance have much to answer for. 

These dehumanising attitudes are often a significant source instigating intense suffering within the lives of our increasingly older population, particularly people who live with dementia. 

We are very quick to proclaim these discriminating verdicts, without even considering the person living with dementia as being the only true expert linked to their own personal experience. 

People living with dementia are the actuality, and thus it is only they who truly live the reality we need to grasp, and it is only they who can illustrate to us the diverse and intricate possibilities within their individual truth. 

Hence, by listening to them, we gain an unbelievable insight, into a certainty of which may eventually, reverse all the stereotypes that WE have created about them. 

Contemplate what it must feel like to be ostracized, judged, and treated as if you have lost your humanity just because you have a condition that affects your brain. 

As we know, dementia does not damage a person’s humanity, the necessity to communicate, feel, continue relationships with others, and to feel appreciated and ‘affirmed’ as a complete being within this current moment. 

Losing one’s memory does not mean losing oneself. 

To care for or understand a person living with dementia in a respectful and dignified manner, is to fundamentally enable them to continue living life as they know and choose it, thus requires a major conversion of ‘our’ inner fears and impressions associated with dementia. 

It is essential we are held accountable for the twisting of information shaped from intellectual suppositions and uncertainties, fashioning typecasts that have been for too long, based purely on our own internal dread. 

These arrogant and heartless suppositions about those we consider to be ‘different’, ghettoize and isolate people living with dementia in an extremely personally destructive manner. 

Let us contemplate the perspective of people who live with dementia, without the judgmental generalisations that we tend to place upon them. 

The best we can do, as cognitively aware individuals, is assume, given the incredibly diverse variables of every individual who lives with dementia, correlated with our limited ability to grasp life through the eyes of these incredibly resilient and courageous people. 

Consequently, it is likewise and therefore, our responsibility to dispel those stereotypical myths, by navigating change, that shall enable people living with dementia to live their lives free of the stigma we have so recklessly pitched in their direction. 

Instead, maybe we should examine and encourage intensified awareness regarding the specific rights and needs of those who live every single day with this condition. 

We must accordingly, cease the inequitable labelling of people, which continue in our so-called educated society, to be founded on attitudes constructed about a condition we can barely conceive. 

Hence, if we truly understand the reality, and specific needs of every individual living with dementia, in relation to their perspective, we might significantly and profoundly influence their lives positively, minimising core suffering and inner pain from occurring. 

Simply by ‘listening’. 

The context of pain

Chronic, relentless, debilitating and poorly managed intractable chronic pain in older people living with dementia is habitually discussed as a significant indicator for incapacity and rapid deterioration. 

It is similarly often proposed, that when a person living with dementia doesn’t actually ‘verbalise’ they are experiencing considerable physical pain, we may erroneously presume that they are not suffering pain at all. 

Or even, as some medical professionals may suggest, people who live with cognitive changes do not experience pain on the same level as a cognitively aware individual may. 

What rot! 

How overwhelmingly heinous is this neglectful cruelty, and flippant disregard for a person’s suffering?

As I often reinforce, this is incorrect information, founded on our reliance exclusively on the verbal aspect of communicating pain. 

This is a highly inappropriate error in judgement, given people living with dementia feel pain just as acutely as we do. 

People who live with dementia, people who have dialectical inconsistencies, or dysphasia, can generally and effortlessly communicate their suffering and anguish, as made evident by observational and visual fluctuations in their functional status, physical ability, nonverbal means of communication, and/or behavioural expression. 

Nevertheless, if we are not attuned to these forms of interaction, a person may be discounted, thus feelings of alienation and loss of camaraderie may occur between individuals. 

This places a person at considerable risk. 

Hence it seems unquestionably challenging for ‘us’, as the cognitive aware person, to display enough suppleness in ‘our’ attitude, to enter into this territory of silent interaction, for the sake of another. 

Does this not seem like we have everything the wrong way around given we are not the ones with cognitive changes?

Does this again not make you question our conceit in expecting everyone to modify themselves and change for us?

If only we could use our perceptive ability, compassion and empathy to be a little more flexible in OUR approaches, we may make life less problematic for highly vulnerable people who interact differently to what we unfairly anticipate and expect. 

Consider and reflect now on a category of pain that is even harder to express, let alone conduct a dialogue about. 

This is pain within the context of emotional, psychosocial and internal agony. 

A pain comprised of loneliness, misery and despair. 

A pain like no other apparently, and one that is habitually overlooked and unheeded. 

Some may say the most debilitating, crippling and excruciating pain of all!

Part 2 to follow.

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