When the old lose their way, the family suffers

As per World Health Organization, Alzheimer’s disease is the most common form of dementia and may constitute 60-70% of cases. Dementia, one of the major contributors to disability in older people, is a syndrome that deteriorates cognitive functions such as memory, thinking, reasoning, and judgment.

It is estimated that 50 million people live with dementia, with 10 million new diagnoses every year. In India, due to increasing lifespan and fertility rate, the population of elderly people (aged above 60) is likely to reach 194 million in 2031 as compared to 138 million in 2021, an increase of 41%.

By 2050, it is expected that the age group will constitute 19.1% of the total population, which means one out of every five people will be senior citizens.

This rise in the population of senior citizens will mean more people with dementia, which significantly affects not only those who have the disease but their families and society at large. It is estimated that over 5.3 million people live with dementia, which will rise to 7.6 million in 2020 as per the report by Alzheimer’s and Related Disorders Society of India (ARDSI).

Health or social issue?

By all accounts, the issue of dementia is not addressed properly in the country. When dementia is diagnosed, families find that care services are disorganized, inaccessible and expensive. With no government support, the issue becomes worse.

“There is no clear-cut definition of dementia. How do we count this problem? Do we take this as a health problem or a social problem?”, asks R Narendhar, Executive Director of ARDSI. He adds that a comprehensive definition of dementia will help decide whether provisions for the disease will come under the Ministry of Health and Family Welfare or the Ministry of Social Justice and Empowerment.

Also read: For Alzheimer’s patients, ‘rapid’ and ‘safer’ diagnosis in store

“If there are government programmes, there is no money released from these programmes except for a few politically well-connected people. Apart from this, there are so many kinds of rules they have kept which are hard to follow. For example, the organizations should have a list of people with dementia. How can organizations run a programme and have data before getting funds?”, he asks. Narendhar alleges that in schemes like Atal Vayo Abhyuday Yojana under the Ministry of Social Justice and Empowerment, the accessibility of funds becomes a very big issue.

“Although there are private organizations that can provide institutional support to dementia patients, not everybody can afford it. My problem is that the government is not doing enough for the large part of the population who cannot afford such services. This also leads to ill-treatment of patients, superstitions and denial of the disease”, he says.

Narendhar stresses that dementia should be mainstreamed across many ministries so that it can have the support it requires, such as transport, health, workplace intervention for family members, among others. “There are a lot of policies on government level but none of them is regarding dementia. We, as an organization, can only work as intermediaries and can do what we can. A comprehensive national policy regarding the disease would really help”, he says.

No welfare measures

Jasmine Sinha, Chief Operating Officer at Hope Ek Asha, speaks on similar lines, saying that the sector is very ‘disorganized’. She adds that there is no government support for care facilities for dementia patients. The organization was founded by Dr Sushma Chawla when she went through the personal agony of having lost her mother to dementia.

It started as a volunteer programme where people from all over the country joined to create awareness regarding the illness. “We have created an impact on 15,000-20,000 families over the years”, Sinha says.

The organization also runs free memory clinics for people suffering from dementia and stresses that unaffordability of care facilities remains one of the major problems among families. “There are people who cannot spend so much on the care facilities and the government seems to have no provisions for such measures. Of course, we try our best to provide free facilities but we too have limitations”, she says.

To address the concerns of dementia patients, private organizations like Hope Ek Asha have started free care facilities for people coming from financially disadvantaged backgrounds, funds support for family members, and created community funding groups for financial support.

Neglected segment

Ruing the government's neglect of patients with dementia, Narendhar says, “One of the reasons that there is no institutional support for people with dementia is because they mostly come from the age of 55 or above – the population that the government does not look forward to” – something which Sinha affirms.

Narendhar emphasizes on the need for institutional care of the patients whose illness progresses to severe dementia. “There is a point when family members cannot provide the care required for the patients. In scenarios like these, institutional care cannot be avoided and the access to it becomes a problem for the larger number of people”, he says.

He shares his own experiences with the illness when his father suffered from it. “The biggest problem for caregivers is the lack of acceptance. They don’t accept that such an illness has happened to their family members’, he says.

He adds that during the initial time period, there is a refusal to accept the illness and the family caretakers believe that the patient will improve but the situation only aggravates. Due to the nature of the illness, some members also believe that the patient is doing it deliberately and dismiss the seriousness of the disease. Some of them may become irritated because the person's behaviour undergoes a change.

“There is always a reference point. For example, my father was an epitome of discipline and cleanliness. But once he suffered from the disease, he would even pee outside the toilet seat. All of this becomes irritating with time for someone who has other work to do”, he says.

“One of the mistakes caregivers make is chiding them. This comes as a surprise to them and they feel alienated”, he remarks.

He adds that when his father’s situation became worse, he himself could not get the time to sleep and his productivity at work deteriorated. “This happened when I had hired a day carer. For people who cannot afford them, it becomes quite impossible to operate. It’s not the patient who suffers, it’s the entire family”, he says.

Asked if the day carers at care facilities are trained, Narendhar says that organisations like ARDSI create a manual to give proper training to carers and the family members who wish to care at home. “In this way, we are creating a pool of both institutional carers and domestic carers”, he says.

However, Jasmine Sinha says attrition rates are very high for professional caregivers. “Most of them come from financially disadvantaged backgrounds. Once they find a better opportunity, they leave because the job is demanding”, she says.

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