Editor's Note: The below opinion is not a criticism of the existing health care framework for Alzheimer's, but an appeal to recognize and address the growing disease burden. The case study is fictional derived from neurologist’s experiences.
A successful husband, a large house, two happy children educated and settled in the USA, a rewarding social circle – Mrs B had a wonderful life. But her erudite husband had begun forgetting immediate events by his early seventies. Often struggling with financial transactions, he also became paranoid about the intentions of his house-staff, and even got lost at night one time driving back home.
A visit to the neurologist, and the investigations that followed, ended in her husband getting a dreaded diagnosis – the "A" word. Her equanimity was shaken when she was told that Alzheimer’s disease is progressive and therapies are symptomatic, but that the disease doesn't have a cure.
In the short span of 16 months, Mrs B's life changed dramatically. Her husband became emotionally dependent on her presence and would ceaselessly call her name if she wasn't visible to him. He required assistance for most activities of daily living. Any change in the appearance of his room, or the way things were arranged in it, was met with agitation. The psychiatric medication prescribed to him made him sleepy, immobile, and hard to handle. He slept poorly and called out to her frequently at night.
Three years since the diagnosis, he couldn't differentiate the toilet from his kitchen – a sanitary chaos ensued. Her twenty-year-old staff found it difficult to understand his suspicious behaviour and imaginary allegations of thievery. When she explored daycare for patients like her husband, she found that there wasn't an easy-to-use transport service to any of the handful of options. Her world had gradually spun out of control, and she needed counselling and medication to allay her stress.
Such scenarios are increasingly documented in nuclear families in urban India.
The government isn't currently prioritizing their needs, since the medical system is already burdened with the responsibility of providing basic care for infectious illnesses, cardiac ailments, oncology problems etc.
The realm of the ageing and medical problems it brings with it, are yet to find a place for thoughtful planning in health care services and delivery. Alzheimer's is one of the most important geriatric concerns worldwide, and needs more consideration than it is being given today.
The requisite training for geriatrics (health care of elderly people) as a speciality is limited to a handful of medical colleges. Training of nurses and other medical personnel in the nuances of case for dementia patients is seriously lacking. The number of neuropsychologists catering to care-giver counselling are few – and strung out in metropolitan cities only.
Due to the shortage of skilled health care staff to meet the needs of people with Alzheimer's, neurologists need to wear different hats – to assess, investigate, counsel and offer help with resources for patient care. To many, this daunting task is too burdensome to give it due time in the middle of a day at busy clinics. The care-giver, as a result, is left feeling lost in a sea of events that spirals into a mountain of challenges they have no choice but to cope with.
While there are organizations like the Alzheimer's and Related Disorders Society of India (ARDSI) and its state offshoots, their reach to patients and caregivers is woefully wanting. The government needs to prioritize this large void in geriatric care on an urgent basis. An assessment of local numbers and demographics on a national scale, integrating specialists in dementia care with ancillary trained staff, and setting up care facilities with provisions for day care are the need of the hour.
The current reality of coping-on-the-go poses a large burden on caregivers, who are not just left unprepared to deal with the challenges that lie ahead, but also have no voice or platform for reparations. With improved cardiac and vascular procedures, Alzheimer's patients are now living longer, but at risk of succumbing to failing brain health and an ill-prepared system to address their needs.
The author is the Director of the Neurology Department at Jaslok Hospital & Research Centre, Mumbai
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