"My mother reads the same book every day. She never asks for a new one. In fact she doesn't know that it has been the same book for a while," said MS Chandrasekaran who retired in 2012. His now 84-year-old mother was diagnosed with Alzheimer's disease in 2015.
While the possibility of cure is narrow in case of Alzheimers, Chandrasekaran, psychologists and doctors tell Express why early diagnosis and long term care management is crucial to retard disease progression ahead of International Alzheimer's Day on Monday.
Alzheimer's disease is a progressive disorder that causes brain cells to degenerate due to accumulation of toxic protein in the brain. It causes dementia -- a continuous decline in thinking, behavioral and social skills that disrupts a person's ability to function independently.
"After my father died in 2006, my mother was very independent. She used to travel alone using public transport to temples far away," said Chandrasekaran adding that there were sudden changes in her behaviour such as memory loss and confusion. " I took her to a geriatric doctor in 2015. She was asked to draw a clock that is showing three o'clock and she couldn't. He showed some objects like pen, pencil, etc and asked her to recollect but she could not tell correctly. She was diagnosed with mild Alzheimer's," he said.
Prevalence and cause:
Chandrasekaran's mother is among the 3-5 percent of people over the age of 60, who develop dementia. Epidemiological surveys have shown that there are five million Indians with dementia and Alzheimer's a major cause for the same, says Dr Suvarna Alladi, professor of neurology at National Institute of Mental Health and Neurosciences (NIMHANS).
Apart from genetic predisposition, there are no definite causes for Alzheimer's. However there are many risk factors, managing which effectectively can slow down the disease, says Dr Alladi emphasising that this is the reason why early diagnosis plays a crucial role. Forty per cent of cases of dementia are caused by 12 risk factors which can be modified. While hypertension and illiteracy are examples of risk factors bilingualism and good arithmancy are protective factors," she said.
Dr Priya Thomas, a faculty of the Psychiatric Social Work at NIMHANS said that memory loss due to vitamin or other deficiencies can be reversed if early intervention is sought.
While there are no commonly used drugs to cure the disease, long-term patient care has been seen as the way forward at this point. Activity scheduling, keeping the elderly intellectually stimulated and providing social engagement can slow the disease progression, said Dr Thomas.
There are four major types of care programmes available: institutional or residential care centres, respite care centres for a limited number of days, day care centres for assistance during the day time and home-based care. While there are few government-run institutions, "There are many old-age homes that take dementia patients without knowing how exactly to manage care," said Saadiya Hurzuk, a psychologist and an early career researcher with Alzheimer's and Related Disorders Society of India (ARDSI).
Stating that only 10 per cent of those with dementia gets proper diagnosis and care, she added that even the available care is very expensive. "Enrollment into private day care for Alzheirmer's patient can cost up to Rs 15,000 a month. Travel cost may be more. If you're appointing an attender at home, the cost may even be as high as Rs 40-50 thousand for 24*7 care," she said emphasising the need for government-run institutional care. In the absence of the same, home-based care has become the most common in India for those with the disease.
Early diagnosis and ridding stigma is the key to long-term care, says Vasundharaa S Nair, Senior Research Fellow, NIMHANS. "Before I started working on dementia, I myself had a lot of myths and misconceptions. Many caregivers feel stigmatised and people do not seek help because of this. Even after diagnosis patients and their caregivers continue to be in denial" she said adding that being able to speak freely in the society may actually improve long-term care for those in need.
Once diagnosed, patients should be prevented from kitchen activities, driving or doing other risky tasks. "Caretakers should also inform doctors about all possible care options available, such as number of family members who can care, financial status, neighbourhood, etc., so that they can come up with a long-term care management programme within the restrictions," she said
Dr. Bhuvaneshwari Rajendran, Consultant Neurophysiology and Neurology, Kauvery Hospital, Chennai said that it is important to find support groups and care centres so that both patients and caregivers do not feel lonely in the journey. She added people should not confuse age-related memory and approach doctors as soon stark behaviour changes, particularly to do with memory, are observed. "Stimulate your brain, never stop being active, don't stop being curious. That is how you slow down this disease she said.
India, which is often termed as a young country, will have a large number of senior citizens in two decades. Therefore, long-term dementia and Alzheimers care may be a public health crisis in the future, if it is left unattended, said Nair.