State Responsibility in Protecting Dementia Patients’ Rights

One day, a striking news report came out about Shabnam Mustari, the brightest star of Nazrul Sangeet in Bangladesh— she could no longer recognise anyone! It was later revealed that she was suffering from dementia. The same illness has also affected the wife of Dr Muhammad Yunus. In a television interview, the chief adviser lamented, “She no longer recognises anyone but me. What will happen to her once I am gone?” These are examples of people with access to modern healthcare and the means to afford it. The reality, however, is that dementia today grips elderly populations across all classes and professions, from cities to remote villages.

Millions across the globe are suffering from dementia, a brain-degenerative condition. According to the World Health Organisation (WHO), as of 2021, around 57 million people worldwide were living with dementia, 60% of whom reside in low- and middle-income countries. The latest studies show that 8% (one in every twelve older adults) of Bangladesh’s elderly population suffers from dementia. The WHO further reports that dementia is the 7th leading cause of death globally. Both worldwide and in Bangladesh, the prevalence of dementia continues to rise.

Since dementia affects memory, cognitive ability and normal behaviour, it is surrounded by stigma and misconceptions. Many people consider it to be a form of insanity or delusion, while some believe it to be the result of supernatural essence or sin. Consequently, society’s attitude towards people with dementia is often strange and, in most cases, negative. Families tend to conceal their loved one’s condition for as long as possible, and this delay leads to further damage, accelerating brain degeneration. Most individuals with dementia and their families end up living an unbearable life.

In 2017, the WHO called upon its member states to prioritise dementia as a public health issue, urging at least 75% of countries to formulate national dementia policies and action plans by 2025. Yet, to date, only 25% of member states have succeeded in doing so. Bangladesh has not yet taken any such initiative. Given that the elderly population in our country is steadily increasing, alongside the rising number of dementia cases, the social, economic and state-level burden is also growing at a significant rate. It is often observed that the social, economic and legal rights of this population are violated at every step. Therefore, it is the responsibility of the state to ensure protection so that their final days can be lived with dignity and comfort.

Bangladesh has introduced several policies and laws, including the National Policy for Older Persons, the Parents’ Maintenance Act, and the Mental Health Act and Policy. There are also various laws and regulations aimed at ensuring social safety nets for vulnerable and disadvantaged populations. Yet, none of these specifically address the protection of people living with dementia, including Alzheimer’s and other forms of dementia-related conditions. For example, the Rights and Protection of Persons with Disabilities Act, 2013, recognises 12 types of disabilities, but it does not include age-related cognitive impairments. The Department of Social Services provides financial assistance of Tk50,000 for six designated critical illnesses, but there is no provision for dementia patients, particularly those who, upon reaching its advanced stage, lose memory, reasoning, intellect and all physical capacities, waiting for certain death. Yet the burden dementia imposes on families, finances, society and healthcare systems is no less, indeed often greater, than those six listed diseases. Hence, the government must urgently extend social protection to this most vulnerable group among the elderly so that they do not face their final days alone.

Experience shows that many individuals with dementia, despite owning vast wealth, are left to wither away under the neglect of their children or families. Some fall victim to outright abuse. I personally know of a distinguished gentleman in Dhaka whose only son denied him even a drop of water for days during his last moment, while other children looked on helplessly. Such cases highlight both a lack of rule of law and gaps in the law itself. For example, if a father dies due to neglect or abuse by a son, should that son still inherit his father’s property? Current laws on elder care provide no clear provisions on this matter. While courts can exercise authority under both civil and criminal law based on evidence of criminal offense, there is an urgent need for explicit provisions in statutory law. Although the Mental Health Act touches upon issues of guardianship over a dementia patient’s property, there is no clear legal assurance regarding treatment decisions or covering medical expenses after the onset of incapacity.

Family conflicts over who will provide for the care and treatment of a parent with dementia are also common. Eventually, one child may assume responsibility out of compassion, but civil law dictates that after a father’s death, his debts and funeral expenses are borne by his children, payable from his estate. If one child shoulders this financial burden during the father’s lifetime, why should it not be recognised as a shared debt of the siblings? It is imperative that the Parents’ Maintenance Act incorporates clear provisions on this issue.

Those living with dementia once spent their golden years contributing their intellect, energy and abilities to the welfare of this nation. They gave much to their families, society and the state. Now it is the duty of the state to ensure their basic protection.

_____________________________________

The writer is a public health specialist and Assistant Professor, Psychology, North South University. He can be reached at [email protected]