Social connectedness – overlooked need of those living with dementia

Perhaps we have to move from the model of merely 'caring' to one of partnership

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By Cecilia Chan

I am pretty sure like me, your social media was swamped with New Year wishes recently. Why is social media so popular? Have you given it a thought?

Could it be that it boils down to a simple basic human desire – the need to connect, belong and be part of a group?

Countless studies have pointed out that – from the smallest rodents all the way to us humans – we are profoundly shaped by our social environment and that we suffer greatly when our social bonds are frayed.

It is well established that when this happens in childhood, it can lead to long-term health, social and educational problems.

So, we are wired to be social. We are driven by intrinsic motivations to stay connected with other humans.

What happens when one of us can no longer verbalise? This is very common in the world of dementia: people living with dementia lose the ability to speak using words or language.

Why do we often assume that when people cannot speak, they have nothing to say? Let us pause a second to reflect on this absurdity. Not being able to speak is not the same as not having anything to say. Just because someone is unable to articulate what he or she wants, we overlook their experience in favour of ours.

Often, we jump to the conclusion (quite wrongly in many cases) that their needs and feelings are the same as ours because we have no other guidelines than our interpretation of their response or even lack of it.

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A friend of mine (whom I will call Adam) craves human connection. He gets visibility excited and will launch into a series of what we often label as “incoherent” chatter or speaking “gibberish”. Often, he is left alone in the house with no human interaction and connections other than basic physical needs like food and personal care being met.

In reality, Adam, who had been supplying seafood to restaurant operators all his life, is vibrant and friendly and enjoys human connection.

Dementia affected Adam’s language comprehension and production, but not his need to connect. He grew more and more frustrated and angry and began to demonstrate his frustrations physically and emotionally.

It was not a rocket science discovery that when my team connected with Adam daily, meeting his most fundamental needs as a human being, he transformed back to his real self.

Stepping into Adam’s world teaches us about ourselves and him. It helps us to reach further into our world and its meanings, providing us with deeper reflections of what meanings it might hold for him.

My team realises that to truly know another person and be open to who they are, we must initially know and be open to ourselves. It is not static but rather a progressive relationship between two communication partners, where walls of power, superiority-inferiority or normal-abnormal have to be demolished so that learning about oneself and others and connecting become central.

The experience of the world of dementia raises many crucial questions about the nature of self and personhood. No other disease is experienced in isolation as dementia.

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Dementia demands a profound question about what it is to be human and how we are defined as people. It draws us to a world where we recognise our limitations and our vulnerability.

Often, we are being forced to open parts of ourselves that we prefer to be hidden. It exposes our vulnerability as a human being. It can seem too tender, too raw, too naked.

How can we turn ourselves inside out so that our inner world – the place where we feel – connects with the sentient space of our friends living with brain changes such as dementia?

Perhaps we have to move from the model of merely ‘caring’ to one of partnership, so that our partner no longer feels himself or herself to be an object to whom life happens as a kaleidoscope of barely related events – but as a valued individual whose feelings and needs are sought out and validated.

“…if we listen attentively
we shall hear a faint flutter of wings,
the gentle stirring of life
and hope.” – Camus (1960)

Dr Cecilia Chan Woen Min is a gerontologist, researcher, dementia activist and advocate

The views expressed in Aliran's media statements and the NGO statements we have endorsed reflect Aliran's official stand. Views and opinions expressed in other pieces published here do not necessarily reflect Aliran's official position.
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