Bharathi Ghanashyam, Founder & Editor, Journalists Against TB points out that policy support and government schemes for mental health exist more on paper. Schemes and Acts aside, on the ground, there is much to be done
Latha (81) (name changed), a retired scientist, is seated on a sofa in her comfortable home for seniors. While a television blares noisily in the background, she is ranting at her caregiver for not believing that she is actually sitting in the arrival lounge of an airport. “Physically she is in good health, but aggressive and confused on some days.” says her caregiver while calming her down. Latha’s mind, ravaged by advanced stage of dementia is a disturbing medley of confusion, anger and partial or no recall of people and incidents around her. Her caregiver bears the brunt, mostly uncomplaining but the stress does get to her often. She says, “It is tiring and often very traumatic to be her caregiver. But I need the money I get so I stay on.”
Maya (50) (name changed) is caring for her mother who suffers from dementia that is progressing fast. She says, “My mother has become very intolerant and demanding and caring for her is exhausting. I am her main caregiver and cannot leave her alone even for short periods for fear she might wander out of the house. I have health issues too and get tired easily. We cannot afford a full-time caregiver. I wish there were affordable short stay homes where I could leave her when I need a break. That would make my task easier.”
Latha’s and Maya’s stories are poignant for the challenges they throw up at several levels. Dementia is problematic at several levels. At the patient level, there is expense, discomfort and compromised lives; at the caregiver level there is stress, trauma and helplessness. A look at the numbers, the challenges and the impact on society and households…
Mental illness – widely present and yet…
World Health Organisation (WHO) states that one in every four families worldwide cares for a member with a mental health problem of some kind. DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) reports that there are 300 types of mental illnesses. The Ministry of Health and Family Welfare (MoHFW), India estimates that 6–7 per cent of India’s population suffers from a mental disorder (Source: India is failing the mentally ill as abuses continue, The Lancet). Data also demonstrates it is easier to detect and treat physical ailments than mental illness. Dr Aravind Sheshadri, psychiatrist and psychotherapist says, “The mind is like a minefield and diagnosis is difficult as presentation of symptoms can change. Objectivity is limited with regard to the mind as opposed to the body and opinions are often subjective.”
Dementia – a part of the broader canvas
Dementia is a part of this broad canvas and WHO estimates that there are 50 million people living with dementia worldwide also indicating that numbers could be higher given that it is an under-diagnosed condition. According to the Dementia in India Report 2020 published by Alzheimer’s and Related Disorders Society of India (ARDSI), it is estimated that 5.3 million people above the age of 60 have dementia in India in 2020. This equals to one in 27 people and could rise to 7.6 million by 2030. While numbers are important, the social and economic impact of dementia, which debilitates individuals, families and in fact all of the society, is equally vital. It is little appreciated and even less addressed. Let’s first understand dementia.
ARDSI defines dementia as “… a syndrome, usually chronic, characterised by a progressive global deterioration in intellect including memory, learning, orientation, language, comprehension and judgment due to disease of the brain. It affects mainly older people; only 2 per cent of cases start before the age of 65…”
Dr Anita Rego, psychiatric social worker, sheds further light, “The onset of dementia may be sudden and swift in some cases and in others slow and progressive. Several factors, such as blood pressure can cause be responsible for this. Controlling the blood pressure often makes a difference and reduces the damage. While dementia cannot be cured, the associated symptoms such as depression, irritability or sleep disturbances can be treated.”
The burden of dementia
People with dementia have intensive requirements for assistance and experience progressive levels of dependence, such as for even basic personal hygiene as the syndrome progresses. At a family level, it causes enormous financial and mental burden, and economic losses at the society level. Data indicates that the annual cost of caring for a person with dementia is as high as Rs 45,600 to Rs 2, 02,450 in urban areas and Rs 20,300 to Rs 66,025 in rural areas, which are met as out-of-pocket expenses by families (Source: Cost of dementia care in India, Delusion or Reality?).
Additionally, studies from India indicate that caregivers cut back on work and nearly a quarter of all caregivers suffer economic losses as they are unable to fulfil their work responsibilities. Latha’s guardian says, “We are shifting her to a dementia village now as her condition is advanced and she needs specialised care, which we are unable to give. It is coming at a great cost, which she is able to bear from her own savings.” While Latha is in more fortunate circumstances, what is the plight of more disadvantaged families?
Complete absence of state support
The numbers are there and the impact is visible. Policy support and government schemes for mental health exist but more on paper. India is a signatory to the Alma Ata Declaration that states that health, which is a state of complete physical, mental, and social wellbeing, and not merely the absence of disease or infirmity, is a fundamental human right.
In 2006, India was among the many countries that signed the UN Convention on the Rights of Persons with Disabilities, which includes people with mental impairment. India also has a Mental Health Act and the Persons with Disability (PWD) Act, that provide for protection and treatment for the mentally ill. The National Mental Health Programme (NMHP) was introduced in India in 1982 with the chief objective of ensuring availability and accessibility of minimum mental health-care facilities for all, particularly for the most vulnerable sections of the population. This was to be achieved by integrating mental health care into primary health-care services (Source: India is failing the mentally ill as abuses continue, The Lancet).
More recently, on 1 April 2020, the Ministry of Social Justice and Empowerment announced the National Action Plan for Welfare of Senior Citizens (NAPSrC) which provides for umbrella services to senior citizens, with specific mention to facilities for dementia care.
Schemes and Acts aside, on the ground, there is much to be done. Dr Lavina Noronha, director, Ave Maria Palliative Care, says, “There is very poor awareness about dementia among the public, and this fuels stigma as well as reluctance to seek early medical help. Dementia patients need continuous monitoring, behavioural management and medication owing to their symptoms such as wandering, aggression, agitation. Most importantly the primary caregivers, who are very often the spouses who are also ageing, need relief.”
Resources also are scarce. The Government of India has recently committed to spending 2.5 per cent of its GDP on health by 2025. However, the allocation for mental healthcare is a mere 0.05 per cent of the total healthcare budget. In fact, the budget allocated to the NMHP has been reduced from Rs 50 crore to Rs 40 crore in FY 2019, as per media reports.
It is debatable how the government will match action to its commitments to the mentally ill, given the magnitude of the problem. There is an urgent need to recognise that people like Maya’s caregiver are urgently in need of assistance to prevent them from further stress both emotional and financial. The problem is escalating and needs urgent societal, government and other support.
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