By Shubhangi Shah
Akansha Kumar (name changed), a girl with special needs, was always kept at her home. When her parents died, she had to move in with her sister, which she couldn’t handle.
It is not uncommon for patients with neuropsychiatric disabilities to be held in detention. For the caregivers, it may seem like the easiest way to manage family members with conditions such as Down syndrome, dementia or autism. But such a lack of exposure deprives them of 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 organization working in the field of mental health. They also need the right environment at home. Neither thinking that nothing can be done nor imposing undue expectations to proceed for a cure is right.
Neuropsychiatric disorders such as autism, Down syndrome, dementia or Parkinson’s disease are either caused by insufficient development or degeneration of neurons. “There’s no going back to normal,” the doctor says, adding, “There’s only going forward.” So, what’s that way?
Understand the condition
A neuropsychiatric disability, unlike a physical disability, is not visible. Therefore, the health care professional may view the patient’s reaction or behavior as intentional or intentional. “That’s where the problem starts,” says Dr. Kapoor. For example, autism is the disability in terms of communication and social interaction. Being surrounded by people can cause anxiety. With such a condition, you cannot expect him/her to communicate normally. “It’s like asking someone without a leg to run,” the doctor explains. Only in this case the leg is invisible; so it can be confusing. Therefore, it is important that the caregiver first understands the condition and that the child does not intentionally withdraw from social interactions.
Likewise, dementia is a degenerative condition in which IQ gradually deteriorates. Memory loss is a prominent feature. “The new memories are not formed, while the old ones degenerate,” says Dr Kapoor.
However, caregivers come to her complaining that the patient remembers everything from 10 years ago, but not what happened on the same day. Understanding that dementia, of which Alzheimer’s disease is the most common type, is a degenerative condition, is key. “It’s only when you understand it that you can find a way around it,” adds the doctor.
Set the right expectations
Down syndrome is a disorder of mental retardation. The patient has certain possibilities and limitations based on his/her IQ. If a patient’s mental age is 10 years, when he is 20; expecting him to act like a 20 year old will only cause frustration. Yes, you have problems, but so does the patient, because they have to live with them. In addition, the caregiver who imposes expectations can generate even more frustration, triggering stress and anxiety.
Patience is the key
An autistic child does not have an intellectual disability, explains neurologist Dr Rajnish Kumar of Paras Hospital in Gurugram. He/she has a communication disability. The child should be exposed to the outside world, but it should be done gradually. “You can’t take the patient right in front of 50-60 people,” he says, adding that it will cause more problems. The correct way is to give the child time to communicate.
Introduce/integrate them into society
The thing about kids with Down syndrome is that they always smile, says Dr. Kumar. They are not one to keep to themselves, he adds. So if you are careful and introduce them to others in a good way, they mix with others easily and quickly.
People with dementia should remain mentally and physically active. Therefore, avoid isolating them and let them do basic chores. Let them go out and buy things, under someone’s supervision, the doctor advises. Have them do the math, prepare staple foods, and involve them in as many activities as possible, he adds.
sensitize others
Patients with neuropsychiatric disabilities often find themselves on the receiving end of swear words, insults, and ridicule. The response should not be to lock them up at home, but to sensitize others. Teach the other kids at school about the condition. Teach them to try to care for their “friend” with special needs. The same is true for extended family members and society as a whole.
Treatment and therapy
Meeting with a specialist can help you better understand the condition. “During therapy, we give them psychoeducation about the condition, its limitations, what to expect and what not to,” says Dr. Kapoor. After we understand the limitations, let’s focus on the strengths, she adds.
What is the way forward?
Keeping the family member with a neuropsychiatric disability at home and seeing it as a safe space is easy. But the right way is to understand the condition and explain it to the patient. Tell them about their limitations and their strengths. Whatever they do, even the smallest initiative, should be appreciated. It increases their self-confidence. “Give the person the respect and attention as an individual,” the doctor says. Do not treat them as their condition. Meet with doctors, therapists, and counselors as treatment is available to manage behavior. Understanding, learning and adapting is the way forward.
About the conditions
autism
- Autism, also called autism spectrum disorder (ASD), is a neurological disorder that affects language and behavior
- Globally, one in 160 children suffers from ASD, according to 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 is more common in the elderly than in people of other age groups
- According to the Dementia in India 2020 report, an estimated 5.3 million people over the age of 60 in India suffer from dementia
Alzheimer’s disease
- It is the most common form of dementia
- Memory loss is its main feature
Parkinson’s disease
- Characterized by tremors in the hands, legs, jaws and head, Parkinson’s disease is mainly seen in the elderly
- In 2016, an estimated 0.58 million people in India suffered from Parkinson’s