Special measures: Understanding neuro-psychiatric disabilities & sensitising others

By Shubhangi Shah

Akansha Kumar (name changed), a girl with special needs, was always kept at her home. Once her parents died, she had to go and live with her sister, which she wasn’t able to cope with.

It isn’t uncommon for patients with neuro-psychiatric disabilities to be kept cooped up. To the caregivers, it might seem like the easiest way out to manage family members with conditions like Down syndrome, dementia, or autism. But such lack of exposure strips them off the ability to adapt.

“Exposure allows them to develop coping strategies,” says Gurugram-based senior psychiatrist Dr Jyoti Kapoor, who is also the founder of Manasthali—an organisation that works in the field of mental health. Within home, too, they require the right environment. Neither thinking that nothing can be done, nor imposing unnecessary expectations pushing ahead for a cure are right.

Neuro-psychiatric conditions like autism, Down syndrome, dementia or Parkinson’s disease are either caused by inadequate development or degeneration of neurons. “There is no going back to normal,” the doctor says, adding: “There is only going forward.” So, what is that way?

Understand the condition
A neuro-psychiatric disability, unlike physical disability, is not visible. Hence, the caregiver can mistake the patient’s reaction or behaviour as deliberate or intentional. “That’s where the problem starts,” says Dr Kapoor. For example, autism is the disability in terms of communication and social interaction. Getting surrounded by people can trigger anxiety. With such a condition, you cannot expect him/her to communicate normally. “It’s the same as asking a person without a leg to run,” the doctor explains. Only in this case, the leg is invisible; so, it can be confusing. Hence, it’s important for the caregiver to first understand the condition and that the child isn’t deliberately withdrawing from social interactions.

Similarly, dementia is a degenerative condition where the IQ gradually deteriorates. Memory loss is a prominent characteristic. “The new memories don’t get formed, while the old ones get degenerated,” says Dr Kapoor.

Caregivers, however, come to her complaining that the patient remembers everything from 10 years ago but not what happened the same day. Understanding that dementia, of which Alzheimer’s is the most common type, is a degenerative disorder, is the key. “Only once you understand it can you find a way around it,” the doctor adds.

Set the right expectations
Down syndrome is a condition of mental retardation. The patient has certain abilities and limitations based on his/her IQ. If a patient’s mental age is 10 years, when he is 20; expecting him to behave like a 20-year-old will only cause frustration. Yes, you are facing problems, but so is the patient as he/she has to live with it. On top of that, the caregiver imposing expectations can generate further frustration, triggering stress and anxiety.

Patience is the key
An autistic child isn’t mentally challenged, explains neurologist Dr Rajnish Kumar of Paras Hospital, Gurugram. He/she has a disability in communicating. The child must be exposed to the outside world, but it should be done gradually. “You cannot take the patient right in front of 50-60 people,” he says, adding that it will create more problems. The right way is to allow the child his/her time to interact.

Introduce/integrate them to society
The thing about kids with Down syndrome is that they are always smiling, Dr Kumar says. They aren’t someone to keep to themselves, he adds. So, if you take care and introduce them to others in a proper way, they mix up easily and quickly with others.

Those suffering from dementia must be kept mentally and physically active. Hence, avoid isolating them and let them do basic chores. Let them go out and buy items, under someone’s supervision, the doctor recommends. Let them calculate, prepare basic food items, and involve in as many activities as you can, he adds.

Sensitise others
Patients with neuro-psychiatric disabilities often find themselves on the receiving end of name-calling, othering, and ridicule. The reaction to that shouldn’t be confining them at home, but sensitising others. At school, educate the other kids about the condition. Educate them that they should try to take care of their ‘friend’ with special needs. The same goes for extended family members and society at large.

Treatment and therapy
Meeting a specialist can help you understand the condition better. “In therapy, we psycho educate them about the condition, its limitations, what to expect and what not to,” says Dr Kapoor. After understanding the limitations, we focus on the strengths, she adds.

What’s the way forward?
Keeping the family member with a neuro-psychiatric disability at home, thinking of it as a safe space, is an easy thing to do. But the right way is to understand the condition and explain it to the patient. Tell them about their limitations as well as their strengths. Whatever they do, even the smallest initiative, must be appreciated. It boosts their self-confidence. “Give person the respect and regard as an individual,” the doctor says. Do not treat them as their condition. Meet doctors, therapists, and counselors as there is treatment available to manage behaviour. Understanding, learning, and adapting is the way forward.

About the conditions

Autism

• Also called autism spectrum disorder (ASD), autism is a neurological condition that affects language and behaviour
• Globally, one in 160 children suffers from ASD, as per the World Health Organization

Down syndrome

• A chromosomal defect, Down syndrome causes intellectual and developmental delays in the child
• Down syndrome occurs in one of 830 live births, according to the Down Syndrome Federation of India

Dementia

• Dementia is the gradual loss of cognitive functions. It’s more common among the elderly compared to individuals of other age groups
• An estimated 5.3 million people over the age of 60 in India suffer from dementia, as per the Dementia in India 2020 report

Alzheimer’s disease

• It’s the most common type of dementia
• Memory loss is its primary characteristic

Parkinson’s disease

• Characterised by tremors in hands, legs, jaws and head, Parkinson’s disease is largely seen among the elderly
• An estimated 0.58 million people in India suffered from Parkinson’s in 2016