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Rewriting the dementia narrative

When we shift our focus from what is lost to what is available and concentrate on what can be done, it leads to fresh possibilities


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By Cecilia Chan

I have been reflecting a lot these days about how society views dementia.

Currently, the fear over dementia is magnified because of media coverage, fundraising campaigns, movies and the literature out there.

Some even refer to those living with dementia as the “living dead” or “zombies” as though they have disappeared or passed away and are no longer with us.

When we look at a person and see only the disease, that is the worst thing that can happen to that person, as it affects the way we relate to those with dementia.

Let me share a true story. I bumped into a senior nurse at a hospital recently.

She told me she was on her way to see the psychiatrist to get sedation for her “demented patient”. She ranted about how her “demented patient” was refusing baths and food and turned aggressive when the staff insisted.

“Why do you think she behaved in such a way?” I probed.

“Because she has dementia, of course!” was her immediate reply.

Can we see the problem here? The current narratives of dementia break my heart. We have ‘medicalised’ their attempts to tell us their unmet needs and labelled their attempts as behavioural psychological symptoms of dementia (BPSD).

It prompts people, like my nurse friend, to look for a medical solution, often a drug, which most often leads to other complications.

I find it ridiculous that we expect people living with dementia to ‘behave’ in what we regard as a ‘socially acceptable way’. It is akin to expecting someone who is paraplegic to start walking or someone who is on renal dialysis to urinate.

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Sometimes we cannot understand their daily attempts to communicate a need to go for a walk, search for a misplaced item or inform us they are cold or hungry, tired or bored. Perhaps that is because they are unable to express themselves through words or their words make no sense (to our minds). We then simply label these communications as symptoms of the disease.

Just do an internet search of the word dementia and you will be bombarded with information that represents persons with dementia as “doomed” and “socially dead”. Search for photos of dementia and the resulting images depict forlorn-looking elderly people, staring into nothingness or pressing their heads in great misery. Often their face is fading away and their heads are drooping.

Such a tragic narrative and perspective perpetuates misunderstandings about dementia, resulting in stigma, oppression and discrimination against persons living with dementia.

Persons with dementia are among the most stigmatised around the world due largely to dominant assumptions in public narratives. Labels such as “victim”, ‘living dead”, “burden”, and “empty shell” are demeaning and derogatory, resulting in dehumanising attitudes towards those living with dementia.

The widely used term BPSD promotes stereotypes that do not reflect the actuality of behaviour or dementia.

Each one of us expresses ourselves behaviourally throughout our lives, so I wonder why we so often judge people who live with dementia based on their behaviour. When we label people by their behaviour and characteristics, we may end up limiting our curiosity about a person. Labels end up conveying something absolute that, once decided, is difficult to navigate away from.

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Could it be that our current opinions and treatment of people with dementia are the very culprit that causes all of us to be so fearful of dementia? If we change our view of seeing people with dementia as having a disability to an approach that supports them by focusing on their strengths instead, perhaps it will lessen our fear of dementia.

A friend of mine was reeling from the news that her mother had been diagnosed with Alzheimer’s disease. My friend was angry over the diagnosis, that it would erode her mother’s dignity and make her life meaningless.

She was also devastated that her mother had forgotten the lyrics of her favourite song and exasperated that her mum was “not interested in anything”.

As I spent time with her mum, I played her favourite song in the background and we worked on a 12-piece puzzle. She could not sing but she could hum. True, she could not remember the lyrics but she could follow the tune and the rhythm of the song. We both hummed along as we navigated the puzzle.

The second time I played the same song, she was whistling to it and, by the third time, the lyrics flowed through.

When we shift our focus from what is lost to what is available and concentrate on what can be done, it leads to fresh possibilities. This spirit of embrace might present a new dementia story – a story of hope, joy and meaning.

For my friend’s mum, this brand-new story is a story of a new connection, a new form of communication. This new story could eliminate isolation because of social stigma and enable connection by embracing the diversity of humankind.

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When my friend’s mum smiled and hugged me after our meaningful time together, it brought new hope. This new story has the power to challenge the negative narrative that fuels dehumanisation, segregation and the institutionalisation of people living with dementia.

Geriatrician and author Dr Allen Power once wrote: “We must change our minds about people whose minds have changed.”

Dr Cecilia Chan is a gerontologist, dementia advocate and activist

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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Wong Soak Koon
8 Feb 2023 12.08pm

Thank you, Dr Chan. Like your earlier article, this is compassionate and insightful. At 74 plus and a post polio person, I undertand how language shapes images which can dehumanise. Growing up as a differently abled person, I felt this deeply. Yet it was loving family and friends who returned a full dignity to me through compassion and sincere acceptance. For those with dementia, let us return to them their human worth, focus on what they still have, not what they may have lost.

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