Dementia is Not a Disease

 

In her book, Vismrit - "A Journey Through Alzheimer's", Bina Berry offers a personal account of her family’s experience with her mother’s dementia.

Berry writes, “Dementia is originally a Latin word meaning ‘madness'. The perception of ‘madness’ created by the word is so strong, that there is a stigma attached to it when you inform people about it. People look at you strangely and pitifully and want to have nothing to do with the dementia patient.”

Nilanjana Maulik, National Coordinator Working Group- Alzheimer's and Related Disorders Society of India (ARDSI) and secretary, (Kolkata chapter) echoes her sentiment, “Stigma around dementia exists in part due to lack of public awareness. Even today when friends, relatives, and neighbors come to know about someone’s dementia, relationships change and there’s a slow withdrawal from the person because they don’t know how to react or respond.”

Dementia is one of the biggest health challenges we face, with nearly 50 million affected people worldwide. In 2015, in India, over 4 million Indians are estimated to have lived with Alzheimer’s and other forms of Dementia. As per Dementia in India 2020, a report by ARDSI’s Cochin Chapter, this number is expected to reach a staggering 14.32 million by 2050. Despite the widespread prevalence of Dementia, many myths surrounding the condition exist, perpetuating stigma for the affected, while worsening the emotional needs of caregivers and driving them into social isolation.

I spoke to health experts and caregivers, hoping to bust some of these associated with the condition

Myth #1: Memory loss and forgetfulness is a normal part of ageing:

While some changes in cognition are a normal part of ageing, dementia is not. It can be caused by different diseases that affect the brain. Alzheimer’s is just one of these, albeit the most common. 

Maulik explains, “People with dementia exhibit memory loss that could lead to behavioural changes. However, dementia is more than forgetfulness. Very often, the focus on forgetfulness distracts us from the other little changes happening in the affected in terms of orientation, language issues and misplacing things, because of which an early diagnosis is missed.” Dr Manjari Tripathi, head of neurology at AIIMS Hospital in New Delhi, agrees, “Most believe that memory issues in old age are normal. Even when a person’s condition worsens and new symptoms add on, they tend to be ignored. As a result, most patients come in for a diagnosis very late and we end up losing the window of opportunity to intervene.”

Myth #2: Dementia is a disease

Dementia is a syndrome, not a disease. It is a group of symptoms related to mental faculties such as memory, language, communication, reasoning, personality, and focus. “In people with dementia, besides memory, which is affected, the other brain functions such as language, ability to recognize people, objects, places, and ability to plan and organize may also be affected,” says, Dr Sridhar Vaitheswaran who heads DEMCARES, the dementia unit of Schizophrenia Research Foundation of India (SCARF) in Chennai. He adds, “The way the medical system in India is organized, there is a big divergence in terms of neurology and psychiatry. People are often confused, whether they should approach a psychiatrist or a neurologist. What matters is that the medical practitioners delivering the intervention, is experienced in dealing with dementia.”

Myth #3: Dementia is hereditary and affects only old people

A common belief is that dementia is hereditary, and it affects only older people. Dr Tripathi says, “Genetics can be a risk factor. However, direct familial transmission is very rare. It can act as a loaded gun, the trigger to which exists in our lifestyle choices. Young people above 45 years of age must have active lifestyles to prevent dementia.” Research also indicates that only 5% of people impacted are above 65 years. Dr Vaitheswaran adds, “Sometimes people can develop dementia in early 50s and early 60s. However, if someone has an early onset of dementia, then they need to explore the genetic causes for that. But even in those cases, we might find that heritability is not that high.”

Myth #4: There is a cure for Dementia

There is no cure for dementia. It is a progressive condition in which a person might be able to function normally during the early stages with a gradual decline. Dr Nishi Pulugurtha, Associate Professor in the department of English, Brahmananda Keshab Chandra College, Kolkata, said, “The common perception is that when you take a medicine, you are going to be cured. For dementia, medication can help slow down the progression. In case of my mother, I had to explain to people that my mother is going to behave differently, and it can be difficult to explain this to observers or third-party caregivers.”

A dementia diagnosis may be very worrisome. But understanding how it works and how it may affect people, can help improve quality of care and quality of life for people living with dementia. Dr Vaitheswaran, signs off, “Prevention of dementia is possible, but it’s not something you start in your old age. Prevention of dementia needs to start early on. Factors such as smoking, alcohol, hypertension, diabetes, etc. may put one at risk of early onset of dementia. Therefore, leading active and healthy physical and social lifestyles is just as crucial for our brain, as it is for our heart.”

Deepika Gumaste - The author is a freelance writer and a fellow at SCARF India (@SRFMentalHealth).

Source: News 18

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