Do I know you?
KOUNTEYA SINHA TIMES NEWS NETWORK , TOI Crest,
Dementia, or disorders of the brain - of which Alzheimer's disease is just one manifestation - is rising at an alarming rate in India. And it is a problem that we are hardly equipped to handle...
Romita Guha was always known for her smiling demeanour. But the once soft-spoken and affectionate 74-year-old retired University professor began behaving 'rather strangely' a few months ago. She had short attention spans and spent hours in her garden staring into space, or watching squirrels play. Guha complained of being hungry about 10 times a day, but did not eat when served. Unable to cope with the present condition of her once-active mother, Guha's daughter Malini decided to consult a doctor. An MRI scan showed that a part of Guha's brain had shrunk - it's what the doctors call "localised atrophy of frontal temporal lobe". And Malini was categorically told, "Your mother is suffering from Alzheimer's disease. And you will now be required to play a very special role - of a caregiver, which will not be an easy job."
The global burden of dementia - disorders of the brain that affect memory and language - of which Alzheimer's is just one manifestation, is set to rocket. And India, with growing life expectancy, will be facing quite a bit of the heat. In such a scenario, are we equipped to take on this new challenge - of taking care of those who can no longer remember things clearly, communicate with us easily or show behavioural changes that we don't seem to comprehend?
"No," said almost all the experts TOICrest spoke to. Caring for a loved one with dementia poses many challenges for families and caregivers. Says Dr Praveen Gupta, neurologist at Artemis Hospital, "The biggest problem in India is that dementia is often unrecognised and underdiagnosed. With the life expectancy of a normal Indian now pegged at 75 years, dementia is threatening to become a major problem. Most people also think the problem with memory and speech is a normal age-related problem, which it is not."
A recent study confirms such a trend. When compared to China and Latin America, relatives of Indian patients were much less likely to acknowledge that elders in their household were suffering from memory loss. When asked, around 90 per cent of relatives in Latin American countries said that they did notice a memory problem in their elderly parents or grandparents, which could mark the early onset of dementia, compared to only 25 per cent of Indians who said so.
Adds Dr Gupta, "What's worse is the fact that institutional care for such patients is minimal in India. It is mainly home-based, with the patients being looked after by family members. That's why the caregiver needs to be properly educated. After all, it will be like dealing with a completely new person - one who has strange behaviour patterns, changing sleep patterns, memory loss and confusion."
According to the latest World Alzheimer's Report (2009), there will be more than 35 million people worldwide with dementia in 2010 and this number is set to almost double every 20 years to 65.7 million in 2030 and 115.4 million in 2050. Almost 60 per cent of the people suffering from dementia in 2010 will be from low and middle-income countries like India, rising to 70.5 per cent by 2050.
Scientists believed that by 2020, around 10 million Indians above the age of 65 would suffer from dementia. By 2040, the number would increase to around 22 million. According to the report, the demographic ageing of population is proceeding more rapidly than was first anticipated, especially in India. "The percentage increase in the number of people with dementia in the next 20 years will stand at 107 per cent in South Asia," the report said.
Dr Kameshwar Prasad, professor of neurology at AIIMS, says that the number of trained caregivers must keep pace with the patients, including those within families. "Education of caregivers and family members about dementia, its effects on the patient, how best to manage care and respond to symptoms, is vital. Taking care of such patients can be very taxing and what's really tough is to see their loved one, whom they have looked up to all along, suddenly start becoming so helpless."
It is important for caregivers to understand that the patient's 'strange behaviour', which could include delusions that somebody is planning to kill them, abusive or violent streaks, getting suspicious, etc - are things they are not doing deliberately. "All of this is out of their control, so it's vital for the caregiver not to try and find a reason for such behaviour. If one has such a patient in the house, it is important they meet a dementia specialist and get counselled on how to take care of him/her," says Dr Prasad.
But that is not the end of the problem. According to the World Dementia Report, about 40-75 per cent of caregivers can suffer from significant psychological illnesses as a result of their caregiving, and 15-32 per cent get afflicted with clinically diagnosable depression. "Caring is a fulltime job - it needs an average of around eight hours per day," say experts. "That's why you need to be trained in such caregiving. The caregiver must get proper sleep. Therefore, they have to plan their life around the patient," says Dr Gupta.
WHO recommends that the health industry of developing countries such as India needs to work on a long-term plan for dealing with dementia and its after-effects. Worldwide, the economic cost of dementia has been estimated at $315 billion annually. The total annual costs per person with dementia have been estimated as $1,521 in a low-income country, rising to $4, 588 in middle-income countries and $17,964 in high-income countries.
Dealing with a dementia patient
- Speak pleasantly. Body language is important. Use facial expressions, soft tone of voice and physical touch to convey your message
- Limit distractions and noise. Address the patient by name, identify yourself by name and relationship. If the patient is seated, get down to their level and maintain eye contact
- Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice. Use the same words to repeat your message
- Ask one question at a time. Those with 'yes' or 'no' as responses work best for the patient
- Be patient while waiting for a reply. If the patient is struggling to answer, it's okay to suggest words
- Give gentle reminders about the steps they forget and assist with steps they cannot accomplish on their own
- If they get upset, change the subject or the environment
- Holds hands. Touching, hugging and praise will get the person to respond
- Remembering the past is a very good exercise. Many people with dementia may not remember what happened 45 minutes earlier, but they can clearly recall what happened in their lives 45 years ago
- Use humour whenever possible
- Avoid aggression and agitation. Do not try to restrain the patient if he gets agitated
Dementia decoded
Symptoms of dementia include
Recent memory loss; difficulty performing everyday tasks; problems with language; time and place disorientation; poor judgment; misplacing things; mood swings; personality changes; loss of initiative
Dementia is common among older people. By 2050, the average Indian life expectancy will rise from the current 64.7 years to 75.6 years. By 2050, the number of Indians aged above 80 will increase more than six times from the current 78 lakh to nearly 5.14 crore At present, 20 per cent of Indians aged 80 and above suffer from dementia The number of people aged 65 years and above in India is expected to quadruple from 6.4 crore in 2005 to 23.9 crore, while those aged 60 years and above will increase from 8.4 crore to 33.5 crore in the next 43 years
