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Stigma syndrome


Being old is shameful, says Maloti Ray. But, says the 72-yearold, what is "doubly shameful" is being old as well as mentally ill. Ray, an outspoken retired school teacher from Delhi who could bring alive even a dead party with her Bengali jingles, was diagnosed with Alzheimer's disease two years ago.

Ever since then, life has changed drastically for Ray. She lives confined to a corner of her apartment. She hasn't gone out in months and spends most of her time humming her favourite songs. "This isolation is worse than death, " she says.
Social stigma seriously affects the global fight against dementia, a syndrome that can be caused by a number of progressive illnesses that affect memory, thinking, behaviour and the ability to perform daily activities. People with elderly relatives who suffer from dementia often go to great lengths to hide the fact from the world because they worry that it will bring them 'disgrace'.

Alzheimer's disease is the most common type of dementia. After age 65, the likelihood of developing dementia roughly doubles every five years. This is the reason why the World Alzheimer Report 2012 released on Friday has focused on overcoming the stigma of dementia.

Dr Jacob Roy Kuriakose, chairman of Alzheimer's Disease International, says low levels of understanding about dementia lead to various misconceptions that result in perpetuating stigma. According to him, people with dementia are often isolated, or hidden so families do not have to deal with hostile neighbours and relatives.

The idea that nothing can be done to help people with dementia often leads to hopelessness and frustration. "Urgent action is required to improve the understanding of dementia and so reduce stigma. Overcoming stigma will help tremendously with achieving ADI's vision of an improved quality of life for people with dementia and their carers as well, " says Dr Kuriakose.

Experts say the stigma associated with dementia leads to stereotyping of all people with dementia as somehow falling into one undifferentiated category. In the early stage of dementia, this stereotyping inevitably leads to devaluing the potential contribution of the person with dementia in conversation, which results in less interaction and an eroding of the relationship of the person with dementia and family members and friends.

A survey released by ADI on Friday to coincide with the World Alzheimer's Day found that around 75 per cent of people with dementia and 64 per cent of carers identified negative reactions. Forty per cent indicated they had been avoided or treated differently because of their diagnosis.

Education, information and awareness were identified as priorities in helping to reduce stigma. One in four people with dementia also indicated they had stopped themselves from forming close relationships after their diagnosis. Some found the idea too difficult to handle while others said they "did not want to be a burden".

The Alzheimer's and Related Disorders Society of India (ARDSI), Delhi chapter - a non-profit organization established in 1992 - recently opened a Dementia Day Care Centre in Tughalkabad Extension which can accommodate up to 10 people.
A van picks up the patients from homes and drops them back in the evening. The centre is staffed by trained carers, nursing assistants, ARDSI volunteers and visiting doctors including a psychiatrist.
The daily routine starts with a prayer followed by yoga, games, television, lunch, rest and evening refreshments.

"We also train family caregivers, professional caregivers and volunteers on the do's and don'ts of care giving. They are trained to handle/ tackle different behavioural problems with suitable tips. We touched about 60 family members this year. We also conduct home counselling to both patients and their caregivers. Nearly 350 people have already benefited through this programme, " says Renu Malhotra, a volunteer with ARDSI.

The society's theme this year is "living together". "The stigma needs to be eliminated and the problems of the affected and their family members need to be supported, socially and emotionally. Things have got slightly better in the past couple of years with more people understanding dementia, " she says.

Alzheimer's disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact is that today someone in the world develops dementia every 4 seconds. ADI estimates that there would be 66 million people living with dementia worldwide by 2030. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

Nearly two-thirds live in low and middle-income countries, where the sharpest increases in numbers are set to occur as elderly populations increase.

"We estimate the global cost of dementia in 2010 at $604 billion. This is 1 per cent of global GDP and it is likely that these costs will increase in proportion to the number of people with dementia, " Dr Kuriakose added.

The WHO Dementia report estimates there were 7. 7 million new cases of dementia in the year 2010, or one new case every four seconds. That is already three times the number of HIV/ AIDS cases (2. 6 million per year).

Assuming that incidence will increase in line with prevalence, since global ageing is driving both numbers, by 2050 the incidence will have increased to 24. 6 million new cases annually. The average annual increase between 2010 and 2050 will be 16. 15 million. India has about 3. 7 million (2. 1 million women and 1. 5 million men) persons with dementia and this figure will double by 2030 to about 7 million persons. This means that there is an urgent need to educate people about the disease and care for patients.

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