“But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.”
These are poignant lines from a bestseller, ‘Still Alice’. It is a moving account of a 50-year old Harvard professor who suddenly experiences forgetfulness; it is diagnosed as early onset of Alzheimer’s. It brought back memories of my father’s struggle with the disease when he was in his late eighties.
The novel, later adapted into a movie, featuring Julianne Moore playing the protagonist, vividly depicts the confusion she experiences when memory begins to fail. It is also a heart-rending narrative of how helpless the family feels.
What was most striking was how little I knew when these symptoms first showed up in my father. A neighbour brought him home when he found him a bit lost and unsure about where he lived. We consulted a neurologist soon after. Old age was blamed and a few medicines prescribed.
Over the course of the next few years and many stays in the hospital, we weren’t much wiser and his condition deteriorated.
In Being Alice, the consulting doctor, not only asks all the mundane but vitally important questions, but also gently and with compassion, guides the family on the do’s and don’ts.
That’s what is painful and agonising. With early diagnosis, understanding the symptoms and the care that needs to be provided, we could have made a difference to the quality of my father’s life. Even if it was just a bit.
Importantly, perhaps the layer of dignity he was robbed off, wouldn’t have happened.
Understanding Dementia
According to the World Health Organisation, “Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.”
Importantly, while dementia mainly affects older people, it is not a normal part of ageing. It has a physical, psychological, social, and economic impact, not only on people with dementia but also on their carers, families and society at large.
The Numbers Are Huge
Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year. Alzheimer’s disease is the most common form of dementia and may contribute to 60–70% of cases. The bad news is that the number of people with dementia is projected to reach 82 million in 2030 and 152 million in 2050. The Alzheimer’s Association estimates that more than 4 million people in India have some form of dementia.
The costs too are huge. In 2015, the global societal cost of dementia was estimated to be a staggering US$ 818 billion, equivalent to 1.1% of global gross domestic product (GDP). It is likely to go up to US$ 2 trillion annually by 2030.
Beyond the numbers are untold stories of pain and suffering, neglect and abuse, stigma and a sense of helplessness and the loss of dignity.
Dementia Sets In Gradually
The early stage of dementia is often overlooked, even by doctors, because the onset is gradual. Common symptoms include forgetfulness, losing track of time and becoming lost in familiar places. As the disease progresses, the signs and symptoms become clearer e.g. becoming forgetful of recent events and people’s names, increasing difficulty with communication and repeating questions, needing help with personal care etc. Dementia then progresses to a stage of near-total dependence, inactivity and sometimes aggressive behaviour
Early Diagnosis Is Critical
Sadly, currently, there is no treatment available to cure dementia or to alter its progressive course. However, much can be done to support and improve the lives of people with dementia and their carers and families. What is important, therefore, is an early diagnosis to ensure timely and optimal management.
Reducing The Risk – Awareness Is The Key
While age is the strongest known risk factor for dementia, it is NOT an inevitable consequence of ageing. It does not exclusively affect older people.
As per new WHO guidelines, the risk of dementia can be reduced by regular exercise, not smoking, avoiding alcohol, controlling weight, healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels. Creating awareness would, therefore, be extremely important.
New WHO guidelines
The good news is that there is greater attention to the issue globally. The recent WHO guidelines recommend that countries create national policies and plans for dementia. An important suggestion is about support for carers of people with dementia.
Looking Ahead, With Compassion
In closing, there is a need to step on the pedal. Dementia will not wait, indeed the numbers are going up. It is here and now. For those affected by the disease and the families and caregivers. They are living the disease today. It is critical that we respond urgently. With love. And compassion.
21 September is the World Alzheimer’s Day
Rajeev Varma is a freelance writer on health issues and a life coach. He is former Senior Communications Officer with WHO India. Views are personal.