Alzheimer’s patients do not have any schemes by the government that help them out with the cost of their healthcare.
If you have ever watched Grey’s Anatomy, you would know what Alzheimer’s does to a family. Everyone who has watched the show sympathizes with Meredith Grey’s struggles with handling her mom, who had Alzheimer’s, a neurological disease which disintegrates the brain. It clearly depicts the toll having to take care of a relative with Alzheimer’s has on a person.
Having to take care of a person with Alzheimer’s is a full-time job; which is why many non-governmental organisations (NGO) which deal with Alzheimer’s victims and their families had organised protests on National Alzheimer’s Day, Sept. 21. They requested the government to provide schemes and disability benefits to Alzheimer’s patients.
People’s Association for Geriatric Empowerment (PAGE) is one of the NGOs fighting for the government schemes. In 2019, Jeradin D’Souza, the secretary founder-president of the Mangalore Alzheimer’s Association (MAA), a part of PAGE, urged the Karnataka government to “implement a scheme on the lines of Kerala to provide infrastructure and financial help to people with Alzheimer’s.”
The most common type of dementia is Alzheimer’s. It was reported in January 2022 that by 2050, the number of people living with dementia in India is expected to rise to 11.44 million. This was predicted by the Global Burden of Disease study which also mentioned that there were 3.84 million cases in 2019 in India. There is expected to be a 197 percent increase in cases.
An official from the Health and Family Welfare Services department said, “We have schemes in place to help other critical diseases like cancer. But as of now, there are no schemes related to Alzheimer’s in India.” He said that they have received requests for a policy to be made for Alzheimer’s patients and are looking into the issue.
Dr. Gowthami, a neurologist, said that there is no proper government care facility for dementia or Alzheimer’s patients. She said that it is not easy to be the family member of an Alzheimer’s patient. “Taking care of an Alzheimer’s patient takes a toll on the family member’s mental health. Most of the time they experience caregiver burnout,” she said. After the symptoms progress to a higher stage, it is recommended for them to be placed in a care facility. She added that if the Alzheimer’s patients receive proper therapy and care, they can have a longer lifespan.
“When the symptoms start affecting the day-to-day activities of the patient, only then we can diagnose it as Alzheimer’s,” said Dr. Gowthami. She said that there are two types of Alzheimer’s; early onset and late onset. Late onset Alzheimer’s starts affecting the victims when they reach their 60s, while early onset Alzheimer’s affects victims under the age of 60. She added, “The most common type of Alzheimer’s is late onset.”
“Women have a higher risk of developing Alzheimer’s because of their longer lifespan,” said Dr. Gowthami. She said that treatment for Alzheimer’s is a multidisciplinary treatment approach. The patients usually need medical care and nursing care too. They also require various kinds of cognitive exercises. They will need to be placed in long-term care facilities once the psychiatric symptoms like delusions start appearing, she added.
Alzheimer’s disease is a neurological disorder which causes the brain cells to die and the brain to shrink. Its symptoms include loss of memory, with loss of thinking, behavioural and social skills. It also causes dementia. Over all, it causes a person to gradually start forgetting everyone and everything around them. It makes them lose their ability to function normally.
Dr. Vipanchika, a psychologist, has been working at the Nightingales Centre for Ageing and Alzheimer’s for over a year now. This is a day care centre for elderly Alzheimer’s patients. She helps the patients with their cognitive exercises. “It is not easy caring for an Alzheimer’s patient. They do not trust anyone and most of the time they are very paranoid,” she said. She said that most of the people who drop their family members here every day have no other choice as they could not take care of them anymore. “It is very hard for them for leave their ill mothers or fathers here, but they know that they do not have the proper training required to take care of them,” she added.
Dr. Ananth Ram, Assistant Professor of Community Medicine, Ramaiah International Centre for Public Health Innovations, said that all the research in India about diseases like Alzheimer’s and the mental health of people taking care of them are at a preliminary stage. Without substantial evidence or scientific literature, a policy cannot be made. “So, it is up to the scientific community to produce research and influence the policy makers to look into this,” he said. He added that the family members of Alzheimer’s patients and the organisations which help them have to come forward and bring the issue into the notice of the government.
Dr. Ananth Ram said that unless political parties get a sense that this is an issue that people are catching on to and think it might affect their chances during elections, they will not come up with any schemes. This is why multiple stakeholders should put pressure on the lawmakers and influence their decision making. He added, “Evidence based decision making should be a norm for political parties and policy makers.”