Reporting about dementia more often do not capture its daunting picture. Yes, dementia can be miserable and chaotic and everything in between. I can think of no other condition that could place such a heavy burden on families, communities, and societies. However, it’s important to focus on the developments and accomplishments in dementia care, because with no cure at the moment, it is often creative thinking that is most needed in supporting those experiencing the journey.
Today, India has around 4.1 million people suffer with dementia and this number is set to double by 2030. Many would like to blame the lack of physical infrastructure in our health system to effectively tackle the challenges of dementia. As a trained professional in dementia caregiving for the past two decades, I have been a frequent witness to the unique needs of both the person with dementia and their family members. What I have observed is that, it is in changing our approach to understand the condition and the people experiencing it that can produce more well-being than anything else.
In my perspective, dementia causes a shift in the way a person experiences the world around him or her. We tend to create a living environment based on our view of the world and then expect that people with dementia should adapt to it. Unfortunately, when that does not happen, we look for reasons to label the negative outcomes.
We, as a society, are busy lamenting about the millions of cells that are lost in dementia, but ignore the millions that are still very much there and can create beautiful meanings in the moment, if we try.
In our day care centre in Kolkata, where people with dementia enjoy their daytime among supportive care partners, I see a wealth of positive opportunities created to enhance the quality of life of everyone involved. Just the other day, I found our cook in the kitchen arranging food on plates with immense delight and hope, despite knowing that portion on some plates would remain untouched. This made me realize why unconditional love and acceptance armed with complete belief in people with dementia who we care for can make a huge difference beyond imagination.
As advocates of dementia, we want to provide the best possible care for those with the condition, while educating hundreds of professionals and family members with our unique philosophy of care. For me, the best way India can prepare to face dementia is to create an environment for living that will offer the opportunity for individuals with dementia and their family members to find contentment and joy.
This, we can achieve by networking with motivated people and organisations working together. In days to come, we need to create that network in India to be “Dementia Ready.” Nilanjana Maulik, National Coordinator, Working Group-ARDSI, Secretary, ARDSI Calcutta