With about 14.9 crores elderly population among us, the threat of dementia looms large. The research done by Longitudinal Aging Study in India (LASI) between 2018 and 2020, showed that 7.1% (or 88 lakhs) of the elderly have cognitive difficulties amounting to dementia.
“This may be an underestimation of the true prevalence in the population. Though the prevalence is not high in comparison to the Western World, it is high in absolute numbers. Hence, the resources needed are very high,” informs Dr. Srikala Bharath, Senior Consultant – Adult & Old Age Psychiatry, Bengaluru. Dr. Bharath is Former Professor of Psychiatry, NIMHANS, Bengaluru, STEPS 4 WellBeing Initiative.
What is dementia?
Dementia is a syndrome that is caused by a group of progressive neurological disorders – Alzheimer’s disease, vascular dementia, and Lewy body dementia, that affect memory, thinking, and social abilities.
People with dementia grapple with memory loss, confusion, difficulty with language, and changes in behavior or personality. Individuals struggle with daily activities and personal care as the disease progresses.
Dr. Pretesh Rohan Kiran, Associate Professor, Community Health Coordinator, Senior Citizen Health Service, St John’s Medical College, Bengaluru, explains, “Unlike age related memory change where the person is unable to recall long-term events, when the person is unable to recall details of recent events or conversations, but likely remembers remote and unusual events it’s more likely to be dementia. Friends and relatives report about the person showing declining memory, but the person is not aware of any problems. Also, the person developing dementia is unable to recognize or know the names of family members, forgets things or events more frequently and has frequent pauses and substitutions when finding words. All of these are some symptoms of a person developing memory loss due to dementia and needs to be investigated.”
Risk factors
As per health practitioners like Dr. Bharath, vascular dementia is the second most common type of dementia. As compared to Alzheimer’s Dementia, vascular dementia affects young and middle-aged people. Chronic conditions like diabetes, hypertension, obesity, high cholestrol makes the young Indians vulnerable to strokes and heart attacks which, in turn, affects one’s cognitive abilities. “Dementia due to these causes has a different pattern of progression from Alzheimer’s Dementia in the initial stages. It is called a step ladder pattern,” elaborates Dr. Bharath.
Income, awareness levels and geography also play a role. According to a report by Fogarty International Centre, by 2050, over 75% of cases of Alzheimer’s disease and related dementias (ADRD) are expected to occur in low-and middle-income countries.
Shyam Viswanatham, Founder, Secretary, Dementia India Alliance, states, “Dementia is more common among individuals with lower education and prevalence is higher in rural areas (8.4% vs. 5.3% in urban areas). The reasons may include lower dementia awareness, and hence, uncorrected risk factors. Prevalence is also higher among females (9.0% vs. 5.8% for males). This is because women tend to live longer than men and age is a major risk factor for this disease. In other words, older people are at a higher risk of dementia than younger ones and since women to live longer, they are more likely to suffer from dementia.” Dementia India Alliance is a not-for-profit that aims to connect, inspire, support, and empower individuals, organisations, and governments in enhancing the well-being of those living with dementia and their families.
Early detection
At a time when India’s old population is predicted to reach 20 crore by 2031, early detection of Alzheimer’s Disease and Related Dementias (ADRD) is crucial, particularly in low- and middle-income countries like India.
Shyam Viswanatham opines that early detection can lead to timely intervention including lifestyle changes, cognitive therapies and medications that slow down the progression of the disease. “Dementia is a progressive neurodegenerative condition. With early detection and interventions, it is possible to keep the person with dementia in the mild and moderate stage longer thereby easing the burden on the families. It can also minimise the strain on healthcare systems/families by reducing emergency visits and delaying institutionalisation. It can help individuals and families plan for future care as well as legal and financial arrangements.”
He adds that timely detection also increase the pool of eligible candidates for clinical trials, improving research outcomes and decrease the overall cost of dementia care, for families.
Treatment and management
Health practitioners advise cognitive assessments, biomarker tests and neuroimaging for early detection.
A medical management of the disease isn’t sufficient. “It is essential to have a multidisciplinary team involving various stakeholders such as Psychiatrists, Neurologists, Geriatricians, community physicians, medicosocial workers, psychologists and caregivers among others,” underlines Dr. Kiran.
The biggest hurdles a dementia patient and his/her caregiver faces even before accessing healthcare are awareness and stigma associated with the condition. It is difficult for families and individuals to distinguish between changes that occur as part of the natural ageing process versus early signs of dementia.
Challenges in caregiving
Dr Jayashree Dasgupta, Adj Professor Chitkara University, Chandigarh reveals, “India doesn’t have enough trained professionals and in the initial stages, it is also very common for people living with dementia to try to hide their difficulties known as masking. As a result, most families approach a clinician after some sort of crisis which makes them realize that something is amiss, for e.g., an embarrassing situation, or when changes become visible. Even then, due to stigma, many adults and families are reluctant to approach a psychiatrist, neurologist or clinical psychologist for fear of being labelled.”
“There are few dedicated hospitals/geriatric centers which have dementia friendly environments. Taking a patient with dementia for follow-ups/regular interventions, also becomes a challenge, leading to low uptake where these facilities are available. Travelling with a dementia patient for long distances is also not easy and can cause anxiety for both, patients and caregivers,” she says.
Dr. Dasgupta emphasises that caregivers feel overwhelmed in the face of emotional challenges. “It can be overwhelming to care for parents who were once independent, strong-willed individuals like a child. Guilt is also very common. Concerns about not doing enough are natural and resources to support caregivers emotionally are few.”
It’s important to note that the majority of care in India is provided by family members who become main partners in the caring journey. “Most often this role is fulfilled by women – daughters, daughter in-laws. Many of them give up their careers, forego other opportunities to care for a parent/s with dementia. We do not have enough dementia trained professional caregivers who understand or know how to sensitively care for someone living with dementia,” says Dr. Dasgupta.
In the absence of social and community care facilities, families do not get respite from caregiving duties.
She concludes, “Recent government initiatives such as the Ayushman Bharat Scheme aim to deliver affordable and accessible healthcare to the poor and vulnerable across India. These are important steps towards improving healthcare services and delivery. But facilities particularly for dementia, remain unregulated and limited across India. And middle class families are the ones who are impacted most.”
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