WCNR 2018: Role of caregivers and dementia awareness discussed at a public form

On the last day of the WCNR 2018 conference, a special public forum was held regarding dementia which involved its patients, their caregivers, NGOs and doctors who discuss the disease and its problems at length. It is estimated that 4.5 million of elderly population in India are suffer from dementia and many cases go unreported

WCNR 2018: Role of caregivers and dementia awareness discussed at public form

Shilpa Bakshi Chandawarkar, who had a family member suffering from dementia, says that being a caregiver to a patient with dementia has changed her outlook towards life. She said no one better than her understands the stigma attached to the disease better.

She was the primary caregiver to her mother-in-law who was detected with dementia. After she passed away, Chandawarkar began spreading awareness on dementia and now counsels others in similar situation like her.

Chandawarkar was one of the speakers at the 10th World Congress for NeuroRehabilitation held at the Renaissance Conventional Centre in Powai.

“Initially, I was confused with my mother in law’s behaviour. I was angry; I thought that she is doing it only to trouble me. Then it came to the realisation and treatment part. I had to educate myself on the disease and no one came forward to help. But in due course, she became my best friend. The NGO Silver Innings played a vital role and the purpose of my life is to spread awareness on the same,” said Chandawarkar.

It is estimated that 4.5 million of elderly population in India are suffer from dementia and many cases go unreported.

Dr Santosh Bangar, a dementia specialist and a geriatric psychiatrist spoke about common features and challenges with dementia.

“It is a loss of brain function and mainly illness of the brain. The incidences of it are on a rise. Its risk increases with age,” said Dr Bangar.

He said dementia has various types and the most common is Alzheimer’s.

He added saying, “The commonest feature is poor short term memory and forgetfulness. Along with other problems such as difficulty in learning new information, planning and organising tasks and communication difficulties,” said Dr Bangar.

He said dementia has a gradual and sudden onset and its risk factors involves age, high blood pressure, diabetes, smoking, stroke, excessive alcohol intake, family history and head trauma.

Talking about challenges faced by the family of dementia patients, Dr Bangar said since there is not much awareness on the disease, crucial time is lost in diagnosis.

He further said, “Many feel that it is age related and there is stigma attached in regards with visit medical professionals. Caregivers a face lot of stress too. Lack of resources and research are major challenges for clinicians treating dementia.”

Dr Dafin Muresanu, chairman department of neurosciences, University of Medicine and Pharmacy spoke about advances in the neurobiology of cognitive impairment.

The session was anchored by Alzheimer’s and Related Disorders Society of India and Silver Innings.

Vidya Shenoy ARDSI that runs Smriti Vishvam, a dementia day care centre said, “At our centre, we have music, dance, laughter, yoga exercises, outdoor and creative activities. We have family support group, games like Sudoku, puzzles etc.”

Sailesh Mishra, Silver Innings spoke about caregivers and their role in dementia treatment.

He said, “Caregivers go through psychological, emotional, social, physical distress and financial too.”  .

He also said dementia needs holistic management

Advising caregivers of dementia patients he said, “Try to establish a routine. Allow the person with dementia to maintain some independence. Protect his/her dignity. Avoid confrontation whenever possible. Maintain a sense of humour.”

He further said caregivers should make it possible to make the home a safe space.

Mishra concluded his talk saying one has to remain flexible. “Dementia is a progressive disease and you will have to adapt to changes that occur over time.”