Alzheimer's and Related Disorders Society of India - An Organisation to Improve the Quality of Life of the People with Dementia


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Vision

Action Plan for Dementia Care by (Alzheimer's and Related Disorders Society of India) ARDSI

Individuals, families, communities, national and international organisations, business houses and national governments are in the process of charting out an action plan for the new millenium. Everyone is approaching this global transition with great expectation and planning. ARDSI, a relatively young organisation, but with a definite agenda of its own is gearing up to face one of the direct outcomes of the demographic transition that is taking place in India i.e. dementia. It is now proved beyond doubt that dementia will be a major challenge that we in India will be faced in the new millennium. Unfortunately neither the public nor the government has fully understood the wider implications of this mind crippling, devastating illness. General estimate has put the figure of those affected by the illness as 3 million. But in actual terms, one has to take into account the victim and his immediate family who are equally affected by this cruel illness, which knows no boundary of race, sex, financial, social or educational barriers. Thus if we take another 10 people in each family, it would be roughly 30 million people who are touched by this illness.

Dementia is a grossly unrecognised, under-diagnosed, ill-understood disease both by the public and professionals. Most important reason, for this is ignorance, another reason is stigma. Other reasons are:

Because it happens to old people

There is no known cure

Lack of facilities for giving better care and support

Alzheimer's & Related Disorders Society of India is the only national organisation whose activities are exclusively devoted to help the victims and their families.
The main activities of ARDSI are to:

Raise awareness

To develop services

To train family members and professionals

To undertake research

Awareness: Lack of awareness is the single most important reason for the neglect of this condition. Unless we improve this situation the condition of those affected will continue to remain miserable. In our experience since we started in 1992 we have come across a number of cases of dementia, who are being ill-treated. This is nothing but basic human rights violation. Only a small percentage of the affected get the proper medical and nursing care.

Dementia is a disability: Dementia, is a disability of the elderly, which cripples the affected persons both physically and mentally. Those affected should be treated on par with other handicaps and all facilities and benefits of handicapped people are made available to them.

Charter of rights of people with dementia: Alzheimer's Disease International, the world federation of Alzheimer's Associations, has come out with a carefully worded document, which clearly outlines the fundamental principles on which we should build up dementia care.

Awareness among general public and professionals: Awareness among the general public to be brought about by

Consistent, Continuous, flow of clear information through news papers, magazines, radio and TV

This will consist of general information about the disease, how it affects families and communities and case studies and available help.

»	Advocacy at the level of state and central government and to sensitise the MLA's and MPs, by raising the issue in assembly and parliament.
»	Use of the existing Govt./machinery to propagate the information at the grass root level
»	Undertake publication of materials, books, videos on various aspects of dementia in simple language, preferably in the regional language.
»	Produce feature films on dementia
»	Participate in public exhibitions by opening stalls etc.
»	Choose certain cities, towns and villages to organise programmes to raise awareness
»	To begin with we propose to undertake programmes to make Cochin city a dementia friendly and dementia-literate city for first time in India
»	Series of activities in schools, colleges, service clubs, large government and public enterprises through seminars, workshops etc. This will also help us in fund raising and membership campaigns.
»	The recent development of "Friends of ARDSI" is a step forward in involving the public to make this a people's movement
»	Another activity which has been taken up presently is to set up a "Dementia Care Fund" (DCF) to offer practical, affordable help to the victims dementia from poor families. This could be "Food, clothing, medicine etc. that will make the lives of the victims and their families a lot more bearable".