Why Bruce Willis’ kind of dementia could go undetected among most of us

“Dementia is generally equated with Alzheimer’s disease. Frontotemporal dementia is a sub-type. This is a step-ladder kind of degenerative disorder,” says Dr Vidyadhar Watve who coordinates the functioning of the Dementia Clinic at Poona Hospital and Research Centre. Frontotemporal dementia (FTD) is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain, according to Mayo Clinic.

These are the areas of the brain that are generally associated with personality, behaviour and language, says Dr Anil Venkitachalam, consultant neurologist, Kokilaben hospital, Navi Mumbai. “The affected person displays socially inappropriate or impulsive behaviour with language problems. It tends to affect younger individuals between 45 and 65 years. There is a difficulty in using appropriate language and there is a gradual loss of control over the brain,” he adds.

There is a change in their eating habits, too, says Dr Santosh Sontakke, consultant neurologist at Ruby Hall Clinic, Pune. “For instance, some patients who do not consume sweets, keep 10-15 chocolates in their pocket at a time and keep asking for different types of mithai,” he says.

Experts say that the signs and symptoms progress over time and at an advanced stage the patient can become slow, have many falls and suffer from swallowing issues. While the exact cause is unclear, there is no cure, neurologists say. “An accurate diagnosis can be made after detailed neurological assessment and brain MRI scan that will rule out other causes,” Dr Venkitachalam says. Dr Watve also notes the importance of multi-disciplinary teamwork in a dementia clinic with neurologists, psychiatrists and neuropsychologists. Dedicated efforts need to be made to bring about lifestyle changes like good diet and nutrition, exercise and rest along with medicines.

WHY IS IT DIFFICULT TO DIAGNOSE?

The disorder can be especially challenging to diagnose early because symptoms often overlap with those of other conditions. And memory problems do not show up that early. So it could be mistaken as an age-related slowness. “Most changes in behaviour or personality caused by frontotemporal dementia may not be very obvious at first. These kinds of symptoms – for example, risk-taking, loss of social or sexual inhibitions, or obsessive behaviour – can sometimes look more like the person is going through a difficult or emotionally-challenging time,” according to Alzheimers.org.uk

8.8 MILLION INDIANS LIVING WITH DEMENTIA

Dementia, a neuro-degenerative brain disease, affects millions of elderly in India and remains a hidden epidemic. It is estimated that 8.8 million people live with it. An equal number of families are also coping with dementia. The numbers are expected to reach 17 million in 2036. There is widespread ignorance, low awareness and stigma surrounding this condition, leading to almost 90 per cent of people never getting diagnosed. Currently, there is no known cure for dementia. The lack of awareness in the community, the stigma attached to the disease, scarcity of experts, dearth of services, lack of trained professionals, and lack of priority given to the disease by the government make the situation immensely challenging, says Dr Radha Murthy , Managing Trustee at Bengaluru based Nightingales Medical Trust,an NGO working for people with dementia since 2006. Services are often inaccessible, unaffordable, and not suited to meet the needs of people suffering from dementia or their families. “Family members of those with dementia suffer enormous physical, financial, emotional burden and poor quality of life,” she adds.

BRING DEMENTIA ON G20 AGENDA

Tackling this challenge at a national level requires active intervention from the Government at the policy level through a national dementia plan. At the third G20 Health Ministers’ Meeting held in Okayama, Japan 2019, JP Nadda, the then Union Health Minister, shared his commitment to tackling the disease. The declaration involved commitment to developing and implementing national action plans, adopting approaches on dementia in line with the Global Action Plan to improve the quality of care and the quality of life of people with dementia, their families and caregivers. “Now that India has assumed the presidency of the G20 for 2023 at the critical juncture, we appeal to the government to include dementia in the agenda of the G20 summit to build greater awareness and create appropriate support systems,” Dr Murthy says.