Time to reimagine dementia

IF only *Charlie could hold his wife *Irene’s hand. Maybe she would talk again. Maybe she would look at him and smile as she used to. Maybe she would eat again instead of wasting away. (*Not their real names.)

Since the Covid-19 pandemic began in 2020, Charlie’s wife, Irene – 73 years old and afflicted with Alzheimer’s disease – has declined dramatically. Left alone in the nursing home, she lost 15kg, could no longer utter the simplest words and stopped responding to the voices of her children. Within weeks, she had stopped recognising even the man she loved. Charlie knows the isolation is killing his wife, and there is nothing he can do but watch. “She is declining so rapidly,” he said.

Irene and Charlie are not alone.

Overlooked amid our war against the coronavirus is this reality: People with dementia are dying not just from the virus but from the very strategy of isolation that’s supposed to protect them. When we rushed to lock society down, we forgot about the needs of one of the most vulnerable groups – those living with dementia.

We have ignored the devastating impact of social isolation on Malaysians living with dementia. Without family and friends able to visit, people’s symptoms worsened much more quickly and connections to their loved ones – sadly, even those who play a vital caring role – have been lost. And it is not just people with dementia who are affected. Such a loss also has a distressing impact on those often overlooked: the army of unpaid carers, struggling to care round the clock for their loved ones, exhausted and burnt out, with nowhere to turn.

On top of that, the dementia story we’ve been telling society is so often a fear-laden concept that causes us to be terrified when we hear the word dementia and its statistics – but could it be that the most fearful part is not the numbers but the story we tell with them?

Living Beyond Dementia Malaysia wants to change this story. The group was initiated among those living with dementia and their care partners to provide support to each other as well as share ideas and experiences. We are collaborating with a global movement called Reimagine Dementia to change the way we look at and treat people living with dementia. The main commitment is to shift the culture of dementia care from centralised control, safety, isolation and punitive interventions to a culture of inclusion, creativity, justice and respect.

Our campaign, Reimagine Dementia Malaysia, is directly rooted in the experiences of people affected by dementia. The strongest and most poignant voices in the movement come from people living with dementia themselves. This gives them the expertise and authority to engage policymakers and decision-makers and, crucially, change things for the better.

Their voices can be heard as people living with dementia who remain connected and engaged, and as they take a leadership role in building dementia-friendly communities.

Every day, we can choose to continue telling the old dementia story, a story that condemns and terrifies, a story that adds burdens to an already challenging journey. Or we can choose to stop and listen. There’s a new dementia story being told. It’s a story not of despair, shame, loss and isolation, but a story of joy, strength, growth and connection.

Let us together start to reimagine dementia.

DR CECILIA CHAN

Gerontologist, researcher, dementia advocate and activist

Butterworth, Penang