'10 million Indians are currently living with dementia, and the number is expected to double by 2036.'
It is said that over 57 million people are living with dementia worldwide. This number is expected to reach 78 million by 2030 and 139 million by 2050.
This statistics may be even more shocking, that one new case of dementia is added every 3.2 seconds, and approximately 10 million new cases of dementia are diagnosed each year.
What will be the situation in India which has the largest population in the world?
Approximately 10 million people in India are living with dementia.
7.4% of those above the age of 60 and older have dementia.
And this is projected to double by 2036.
It is against this background that the Institute of Human Behaviour and Allied Sciences (IHBAS) and Dementia India Alliance (DIA), in collaboration with the National Human Rights Commission and the India International Centre, with the support of the National Institute of Social Defence met recently.
At the meeting, policymakers, healthcare professionals, researchers, social sector organisations and caregiver representatives from across the country discussed what strategy India should have on Dementia.
Ramani Sundaram, Executive Director, Dementia India Alliance, has been working in the field for 15 years.
"Dementia is one of the most expensive and disabling diseases for which a country should be well prepared," Ramani Sundaram tells Rediff's Shobha Warrier.
In 2019 when I interviewed Dr Sridhar Vaitheswaran (who is also a co-founder of Dementia India Alliance) on dementia, it was said that there were around 5 million to 7 million people living with dementia in India.
Now, the number has risen close to 10 million and the number is expected to double by 2036. How alarming is the situation?
It is definitely alarming.
One of the challenges that India always has is lack of right prevalence data.
Currently we look at the LASI DAD (The Longitudinal Aging Study in India-Diagnostic Assessment of Dementia) study published in 2023.
It says that India has 8.8 million people with dementia which is 7.4% of the elderly population (people above the age of 60) are there in dementia care.
The LASI-DAD study says that the number will double by 2036.
The study also says that only 10% of the population receive diagnostic treatment which means there is a treatment gap of 90%!
Though the study was published in 2023, the data was collected much earlier.
So, currently, we may be looking at 10 million people with dementia.
If you look at what research papers say about how dementia has progressed, we see that the number of people with dementia has been rapidly increasing in a progressive way.
I don't know whether it is due to increase in awareness that people are getting diagnosed.
Is the rapid rise in the number of cases of dementia because people are living longer?
Of course, longevity is one big problem because age is the largest contributing risk factor for dementia.
The longer you live, the more the risk of dementia. It is mostly a disease of older people.
The situation is alarming because the kind of impact dementia has on the social, financial, physical and emotional impact it has on families.
That's why when you talk about dementia, you can't say, 10 million people are affected. No. Because the person who is affected has to be taken care of by the family.
We always say, we have to take two family members per dementia patient as who get affected.
They have to leave their jobs and sit at home to take care of the person who is affected by dementia. So, there is a financial burnout along with physical, social and emotional burnout.
When younger people have to leave their jobs and sit at home to look after somebody with dementia, it has an impact on the country as well, in terms of productive hours by the younger person.
Dementia per se is an expensive condition to be handled by a family and the society.
Dementia is one of the most expensive and disabling diseases for which a country should be well prepared.
It was reported that in 2020 that for the first time in the history of humankind, the number of people aged 60 and older surpassed the number of children under 5. So, we are looking at an ageing world...
Absolutely. If you look at India, in another 15-20 years, 19% of the world's elderly are going to be in India. So, we are going to have a huge number of elderly population.
And if you are saying, 8% of them are going to have dementia, we are looking at a very large number because of the number of people in this country!
But we are not prepared for such an eventuality.
Who should get prepared, individuals or families or the State? Should the State have more institutions to take care of the elderly with dementia like you see in the ageing developed world?
There is no simple answer to the question. In terms of who should be prepared, everyone should be prepared.
If you look at the Lancet study of 2024 on risk factors for dementia, they have put out 14 risk factors. (The Lancet study of 2020 had 12 risk factors).
Now, the narration on dementia has shifted to prevention.
You mean dementia can be prevented?
There is no 100% prevention but you can definitely reduce the risk.
In fact, the Lancet paper says 45% of dementia cases could be prevented or reduced if the risk factors are addressed properly.
So, it is a huge opportunity for any country to work on these risk factors in early life, mid-life and later life stages.
The 14 risk factors according to the Lancet Study 2024
1. Quality education in early life. The less education you get in early life, there is a 5% risk of the person getting dementia. This is a policy level narrative.
2. Hearing loss (in mid-life). They say that uncorrected hearing loss can be a contributing factor and it has nearly 7% risk of dementia.
3. Traumatic brain injury. We have so many road accidents and people get head injuries resulting in traumatic brain injury and it has a 3% risk factor.
4. High LDL cholesterol. This is added in the 2024 study and the risk factor is 7%.
5. Physical inactivity during mid-life has a risk factor of 2%.
6. Diabetes also has a risk factor of 2%.
7. Hypertension, like diabetes, has a 2% risk factor.
8. Smoking. There is a 2% risk factor.
9. Depression. The risk factor is 3%.
10. Obesity risk factor is 1%.
11. Excessive alcohol risk factor also is 1%.
12. Social isolation. When it comes to later life, social isolation is a major risk factor (5%) to dementia. Now WHO says that loneliness is officially an epidemic. It also says that social isolation is an epidemic, and it is a contributory factor to dementia.
13. Air pollution is a risk factor of 3%. It means even chemicals contribute to the risk of brain degeneration.
14. Visual loss has been added in 2024 and the study says it is a 2% risk factor.
As a country, we should include all the risk factors pertaining to dementia also in the non-communicable diseases (NCD) programme so that not just cardiovascular issues are addressed but brain health too.
In schools, we should educate children on brain health so that they grow as healthy adults, who will in turn grow into healthy elderly.
Young adults also have to be prepared because there will be a situation in India when we will have dementia or we will be caring for someone with dementia, or knowing someone who will be caring for dementia. So, everyone needs to be aware of it.
Physical activity should be a lifelong process. You can reduce the intensity as you grow older but it should be part of your lifestyle.
And the elderly population, above the age of 60 should ensure that they get good sleep, good health and enough socialisation. Of course, good financial planning too.
You asked about the dementia care centres that are there abroad.
In India, the population is huge, and it is not going to be possible to have dementia care centres. And it is expensive too.
1 in 5 Indians will be a senior citizen...
It is going to be a huge challenge. Dementia is going to be one of the major challenges actually.
We are going to have multiple level challenges in terms of physical health, mental health, brain health, etc.
And institutional care cannot be the answer in India.
Then we are a culture that believes in looking after our elderly parents. Only when you are unbale to take care, people put them in care homes.
So, what we need is community based support system wherein the family is able to take care at the community level, like the dementia day care centres.
Similarly, home care services too.
The government should think of public-private partnership in implementing some of their programmes so that the support systems are not just available but accessible and affordable.
Recently Dementia India Alliance had organised a national conference in Delhi where it was said that a national registry is important. Is that where it should start?
The conference was to talk about how India can prepare for the epidemic of dementia and work towards a national dementia plan.
We felt there were 7 areas that needed priority. We cannot start at one and then move to the other; we have to start in all the seven areas together because we are in a situation where we have to work on all the seven areas.
Areas to work on
1. There has to be awareness among all age groups, at all community levels and among the stakeholders also so that dementia is elevated as a public health priority like what you did on TB.
Unless it is a public priority, policies don't come and conversations don’t happen. We, at Dementia India Alliance, were able to make the Karnataka government announce dementia as a public health priority.
2. We have to work on dementia risk reduction which we talked about earlier.
3. Timely diagnosis and management. Currently, the diagnosis is done majorly in the moderate stages as people do not go to the hospital in the early stages. Then, treatment should be accessible to all.
In the case of dementia, more than medicine, it is the support system that is important.
4. Training at multiple levels; training of doctors, nurses, allied health workers and care givers.
There is a huge dearth of caregivers, not just in India but globally. There is unemployment in India but young people are not coming forward to do the job. It means there is a huge opportunity for employment here.
5. Need for a Dementia registry. This is the most important part. When you have a national dementia registry, we will know how many people with dementia are there. Then, we can find out whether they are getting care, whether they are getting treatment, etc.
To study the trend, it is necessary to have a registry. And India needs its own data for making policies.
6. It is essential to use technology like AI for dementia care.
7. There is a need to promote research on dementia.
Feature Presentation: Rajesh Alva/Rediff