If only Charlie could hold his wife’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.
Since the pandemic began, Charlie’s wife, Irene — 73 years old and afflicted with Alzheimer’s disease — had declined dramatically. Left alone in the nursing home, she had lost 15kg, could no longer utter the simplest words and stopped responding to the voices of her children. Within weeks, she had stopped recognizing even the man she loved. Charlie knew the isolation was killing his wife, and there was nothing he could 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 down, we forgot about the needs of the most vulnerable, those living with dementia.
We have ignored the devastating impact of social isolation for our Malaysians living with dementia. Without family and friends able to visit, people’s symptoms have 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. It 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 else to turn.
On top of that, our dementia story as we have been telling is so often a fear laden concept and 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?
We want to change this story, so a group called Living Beyond Dementia Malaysia was initiated amongst 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 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 are from people living with dementia. This gives them the expertise and authority to engage policy and decision-makers and, crucially, change things for the better.
This campaign hopes to shift the culture of dementia care from centralized control, safety, isolation to a culture of inclusion, creativity, justice, and respect.
But through these movements and campaigns, the strongest voice of the new dementia story comes directly from people living with dementia. This voice can be heard as people living with dementia 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 burden 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
Email: cejosh@yahoo.com
Contact: 013-4384388
