Dementia is in the spotlight again after news emerged last month of Hollywood actor Bruce Willis' diagnosis of frontotemporal dementia. The oft-misunderstood condition became a point of discussion online, and many wondered about its scale and prevalence.
A longitudinal study by the University of Southern California and AIIMS Delhi in collaboration with 18 institutes released in January found that the prevalence of dementia is rising at a higher rate than anticipated. "An estimated 8.8 million Indians older than 60 years have dementia. The burden of dementia cases is unevenly distributed across states and subpopulations and may therefore require different levels of local planning and support," said the new research.
It is in line with the observations from a report from The Lancet in 2022 that said that dementia cases in India were slated to grow by nearly 200 per cent from 2019 to 2050.
Considering these stark statistics, it is time to overview the basics of dementia.
Dementia is a syndrome
Unlike popular beliefs, dementia is not a normal part of ageing. It's a syndrome and an illness caused by various diseases. "It's like the flu caused by various viruses or febrile illnesses. [When we say] someone has dementia, it is not just memory decline common in older people," says Dr KS Shaji, Professor and Dean, Research, at Kerala University of Health Sciences.
He explains that it is classified as dementia only when there is a significant change in memory and other cognitive functions over a few months. It is not normal when compared to people of the same age and educational and social status, and it leads to some form of disability in daily activities, he adds.
Most cases of dementia occur as a result of neurodegenerative diseases like Alzheimer's disease. "Neurodegenerative dementias, which includes Alzheimer's, explains more than 50 per cent of cases of dementia," says Dr Shaji. The death of cerebral neurons necessary for brain function marks Alzheimer's disease.
Another is dementia with Lewy bodies. The Cleveland Clinic explains that it happens due to the build-up of clumps of proteins called Lewy bodies in the brain. Then, there is frontotemporal dementia (Willis' diagnosis).
Dr Atul Prasad, Principal Director & HOD, Neurology at the BLK Max Hospital in New Delhi, explains it as the degeneration of the frontal and temporal lobes of the brain. It is marked by symptoms like Alien Hand syndrome, where the patient loses control of their hand. "The second problem that may develop is a language or speech problem known as aphasia where there is difficulty in understanding the spoken word and [forming] thoughts and translating them into words," he explains.
He adds that some medically treatable dementias may be due to vitamin B12 deficiency or even exposure to some viral infections like syphilis.
"Sometimes, a patient may have a clot in the brain which can cause dementia. If we remove the clot, the patient becomes completely alright," adds Dr Prasad.
Dr Shaji also explains vascular dementia is a result of poor blood supply to the brain. "When cerebral arteries have arteriosclerosis or the narrowing of the lumen, it can lead to the death of small areas of the brain supplied by cerebral arteries. It can eventually lead to a lot of neural loss, which leads to less number of neurons, and, thus less brain capacity."
Apart from memory loss, other signs of dementia include changes in cognition, behaviour, and personality. For instance, a person with dementia may show social disinhibition or find it difficult to dress or undress.
While no definite causes lead to dementia, Dr Prasad shares that some possible factors have been theorised, such as genetic susceptibility (dementia may run in the family), some infections, and deficiencies. Dr Shaji also adds that factors like hypertension and diabetes that put you at risk of coronary heart disease also put you at risk of dementia.
Regarding the recent study's findings that women have a higher prevalence of dementia, Dr Shaji contextualises that there are more women among the ageing population. Moreover, lower educational status and low social interactions and activity are also risk factors for women.
Diagnosis and care
The diagnosis of dementia depends on the history-taking. Dr Prasad provides a step-by-step process: First, you check if it's dementia or something else. Then, you check if it's medically treatable or non-treatable. "Step three: if it's medically non-treatable dementia, how best to treat the symptoms so that the patient and more than the patient, family members are able to cope with it," he adds.
Besides controlling factors like diabetes and hypertension to check for vascular dementia, Dr Shaji suggests that most interventions are for informing and educating caregivers. "Then, the caregiver and other family members can accommodate the deficits and behavioural problems so that their quality of life and that of the person with dementia can become better."
Often, after diagnosis, the person living with dementia and their families do not get the kind of information and awareness they need. That's where the organisations like the Alzheimer's and Related Disorders Society of India (ARDSI) step in. Nilanjana Maulik, Secretary of ARDSI's Calcutta chapter, shares that they have memory clinics where people can come and get their screening. They receive 70-75 per cent of referrals from doctors, which Maulik thinks is significant as families often need support to face the journey ahead. "Then, they are sent to us for counselling and training, [and providing] a care plan that will most suit the particular family."
Maulik says that they are particular about providing culture-specific training and counselling instead of a random checklist. The ARDSI Calcutta chapter also has a daycare centre and home companionship programmes for people with dementia. At the ARDSI, they uphold the rights of the persons living with dementia and give them the first say. So, Maulik advocates for clear communication with them instead of ignoring them entirely. Similarly, they are also working with caregivers who can sometimes take over the life of the person with dementia out of a sense of love and duty. But Maulik says it can harm the patient's understanding, confidence, and identity. "Yes, we need to support family caregivers. But I think somewhere down the line, we also need to support the person living with it because we kind of give up on that person," she adds.
Public health response
Since age does increase the risk of dementia, the rising senior population due to improved healthcare and life expectancy mean India has to be ready to take steps in the right direction. Maulik advocates for preventative steps. For instance, they are trying to request hospitals to include brain checkups in the annual health and wellness program. "In terms of service delivery for the ageing population, I think the community workers like the Anganwadi workers and the healthcare workers play a huge role," she adds.
Dr Prasad also suggests that the families take timely action and not ignore incidents of forgetfulness and other issues. The focus has to be on early diagnosis to control and address it.
Also, Dr Shaji suggests a change in the healthcare delivery system for the elderly because the more aged population will put a burden on healthcare spaces. The way forward, according to him, is to provide care at home or near their home so that their health problems don't worsen. "If you make home-based care of older people a desirable thing and link formal healthcare delivery through outlet services with home-based care, you will allow people to have easier access to healthcare. And navigation into the healthcare system [also] becomes user-friendly," he suggests.
Anmol is an independent journalist who writes and reports on gender, health, social justice, and culture from an intersectional lens.