Changing our thinking about dementia

Who matters? Why do some people matter more than others? What is it to be human?

GORDON JOHNSON/PIXABAY

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By Cecilia Chan

I have earned a reputation for being an eccentric weirdo who likes to be with “crazy people” or “stupid people”.

I understand that some of my views and the paths I have chosen are unconventional, and I find myself immersed in a situation most will avoid.

I happen to spend a lot of my time with people who are living with dementia. It may surprise everyone that at times these people inspire me and even teach me about life.

Let me share my recent experience. I was complaining to a gentleman living with dementia (let’s call him Mike) about the hot weather and how it had not rained in days. I related to him how uncomfortable I felt in this unbearable heat.

Mike is living with Lewy Body and Parkinson’s. After my non-stop complaining about the weather, Mike smiled at me gently, with such compassion. He said it will not last. After a brief pause, he added, the world is so big, I am sure it is raining now in some part of the world.”

I was deeply humbled. Nothing lasts forever; this is the reality of life. Sometimes it gets hot, somewhere out there it is cold, and in some places, it is raining. Does complaining help? This is the nugget of wisdom from Mike, whom some might label as crazy or stupid.

When rationality doesn’t control or rule our interaction, it can be pretty relaxing. It allows us to see the nature of human relationships in a fresh way.

From that place, we can enjoy being with other human beings and connecting with them without worrying about logic or correct interpretation. We need not fear being judged.

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When we can learn to relax and be open to the present instead of insisting that the situation must conform to our preference, we may discover an experience that is authentic and not coerced or pretentious (Unfortunately, we tend to normalise pretentiousness.)

Often people who are living with dementia are ‘missing people’. They are forgotten by a society that values independence, productivity and youthfulness and that shuns vulnerability.

Yet, humans, as a species, evolved to be social. We have an innate, biologically driven ability to develop and form interpersonal connections. The Covid period of ‘on and off’ lockdowns, restrictions and social isolation made it abundantly clear we are not meant to be alone. Nothing has highlighted the importance of social connections more than the Covid pandemic has.

Yet, those living with dementia continue to live in isolation.

Living in an age where autonomy and agency are so highly valued, there are questions that we urgently need to ask. Who matters? Why do some people matter more than others? What is it to be human? What happens when someone is unable to articulate in ways we are comfortable with?

Albert Einstein said, “The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking.”

Perhaps it is time for us to shift our thinking.

Dr Cecilia Chan, a gerontologist, is an activist who advocates for a new, more compassionate approach to people with dementia.  

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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