Alzheimer's and Related Disorders Society of India - an innovative approach to dementia care
Experience of working among children with disability particularly mental handicap could be used to address the challenge of dementia; a mentally disabling condition of the elderly.Having been working for children with mental handicap for several years, why not use this expertise for another brain disorder.
Organization Name
Alzheimer's and Related Disorders Society of India (ARDSI)
Organization Website
Organization Phone
91 4885 223801
Organization Address
Guruvayur Road, Kunnamkulam P.O, Thrissur
Organization Country
India
Is your organization a
Non‐profit/NGO/citizen sector organization
Name Your Project
Alzheimer's and Related Disorders Society of India - an innovative approach to dementia care
Country your work focuses on
India
Describe Your Idea
Experience of working among children with disability particularly mental handicap could be used to address the challenge of dementia; a mentally disabling condition of the elderly.Having been working for children with mental handicap for several years, why not use this expertise for another brain disorder.
What makes your idea unique?
Personal tragedy of losing my father at a relatively young age, due to an illness about which very little was known to the medical profession and the public, was a traumatic experience. In the midst of grief, disbelief, confusion, accusation, isolation, I could see light at the end of the tunnel. I strongly believed that there was a purpose in my father's illness, a disease about which my own knowledge was limited. This was true with the public at large. There was not much we could do by way of treatment.Then I thought; why not do some thing to change people’s concept that it is some kind of madness. The only way to do this was to raise awareness at various levels. This is when my expertise of working with disabled children,especially with mental handicap came to my help. So also all the net work I had built over the years too became very useful. Thus I could convert a personal tragedy to an action to break the myth that dementia is some form of madness; or it is part of old age and nothing could be done about it. During the last 18 years we have proved,that a lot can be done to help people with dementia and their families to lead a life with dignity and honour.
Do you have a patent for this idea?
This Entry is about (Issues)
What impact have you had?
Dementia – as a public health problem came out of obscurity to the attention of policy makers, professionals and the public through the work of ARDSI in India. It has caught the attention of film makers in the country. One film “Thanmathra” in Malayalam won the best film award, another film “Black” in Hindi also won national award, both had central characters with Alzheimer’s disease. ARDSI was involved in the script writing of the film ‘Thanmatra’.
Similarly with increasing awareness, more and more cases of dementia are getting diagnosed. After starting the first memory clinic in 1999 in Cochin now there are over 60 memory clinics in India. This is the case with care services, like day care, home care, respite care services, etc.There are about 10 centres in the country involved in dementia reaearch.Government has approved various training programmes in dementia and geriatric care.Dementia as topic is finding prominece in the confernces of doctors and nurses.Media also has opened up to report the impact of dementia on families.
Problem
The primary problem we are trying to address is the attitude towards dementia and its care. It is a growing public health challenge; particularly affecting the elderly. Estimated number of people affected with dementia is over 3 million in India. This number is expected to double by 2030. Despite the magnitude, there is gross ignorance about this mind crippling tragedy. There are hardly any services available for people with dementia. There few “Memory clinics” that’ll help in early diagnosis. There is stigma attached to dementia; because many people perceive dementia as a mental disease. There is also a mind set even among doctors that there is not much that we can do for dementia. There is lack of adequate scientific data on dementia in India. There is lack of trained manpower at various centres.
Actions
ARDSI is mainly involved in raising awareness, public advocacy, setting up care services, and conduct training programmes for doctors, and family carers and promote research.
In the area of awareness, we have made good progress, from obscurity dementia has emerged as an important public health problem, which is getting acceptance from the government, professionals and the public. More and more cases getting diagnosed and improvement in care too. World Alzheimer’s Day programmes are now observed in more than 2000 centers in India. Our current efforts are to develop a National Dementia Strategy by getting support of government of India. Similarly day care centers and respite care centers are coming up in different parts of India. Training programmes for doctors, nurses, and care givers are conducted regularly. 10/66 dementia research group, an outcome of the Alzheimer’s Disease International Conference in 1998 has nearly 10 dementia research centers in India.
Results
We expect dementia to be recognized on par with any other physical illness. We are advocating to make dementia a health priority in the country, so that it is incorporated in the primary health care programmes. We are advocating inclusion of dementia care through the national rural health mission so that people in the far away areas get the benefit. We are trying to get as much support is given to the victims and their families from various government services. We will encourage best possible care to the victims in their own homes as long as possible. We will also promote day care, respite care etc, depending on the need. Our aim is the see that the people with dementia lead a life with honour and dignity.
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
We are currently working on a National Dementia Strategy which will take care of the three key areas of dementia care (a) Raise awareness (b) Early diagnosis and cost effective intervention(c) long term care and family support. Our plans are for the next three years on how to address the challenges of dementia.
1st year- we will work towards finalising the dementia strategy with the involvement of ministry of Social Justice and Empowerment, Ministry of Health, Professional bodies of doctors, nurses, social workers and family members. We will also work towards strengthening the National Office of ARDSI in New Delhi which will be responsible for advocacy and public policy.
2nd Year - Publication of “Dementia India” a comprehensive document which will have scientific data on the extent of the problem, key areas of action and monitoring. We’ll also lobby hard through the parliamentarians to make dementia a health priority. We’ll work closely with the media to raise the profile of “Dementia India''document which we hope to influence the government and the public at large.
3rd Year- will be mostly dedicated to implementation of the “Dementia India” recommendation focusing on raising awareness, promote early diagnosis, early intervention and long term management. We plan to develop a national net work of chapters of ARDSI and support groups in areas where there are no centers at present. We hope to see the results of the advocacy with better funding from government, corporate,and social sectors to better dementia care.
What would prevent your project from being a success?
1. Getting the support of government will be the biggest challenge. Convincing
the key policy makers, journalists, politicians the need to invest in
dementia care.
2. Attitude of the professionals has to change towards dementia.
3. Ability to get corporate world, insurance companies to invest in the area
of dementia care.
4. Attitude of our media also is very crucial. They need to change the present
negative attitude to one of hope.
How many people will your project serve annually?
More than 10,000
What is the average monthly household income in your target community, in US Dollars?
Less than $50
Does your project seek to have an impact on public policy?
Yes
What stage is your project in?
Operating for more than 5 years
In what country?
India
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
Alzheimer's and Related Disorders Society of India (ARDSI)
How long has this organization been operating?
More than 5 years
Does your organization have a Board of Directors or an Advisory Board?
Yes
Does your organization have any non-monetary partnerships with NGOs?
Yes
Does your organization have any non-monetary partnerships with businesses?
Yes
Does your organization have any non-monetary partnerships with government?
Yes
Please tell us more about how these partnerships are critical to the success of your innovation.
Partnership with NGO’s eg. Professional organizations of doctors, nurses, social workers etc are useful in utilizing their skills for awareness generation, early diagnosis and improving care. Similarly we have been working closely with service organizations, like Rotary, Lions etc. to organize awareness programmes.
We also work closely with business houses to organize programmes for memory screening, developing promotional materials and awareness programmes.
Our relationship with the government is primarily through the Ministry of Social Justice and Empowerment and through the ministry of Health. One area is on developing policies for people with dementia, in organizing training programmes for the professionals and family members. Thus non monetary partnership with these agencies are crucial for the success of my innovation.
What are the three most important actions needed to grow your initiative or organization?
1.Raise awareness among the public particularly those working in health care sector. This is very crucial in spreading the message. We need involvement of public at all level to achieve this, with family members, health care professionals, social workers, media personnel etc.
2.Working with government to make dementia a health priority. This involves parliamentarians, policymakers and other government officials. It is necessary to get dementia included in the various National health programmes particularly in the primary health care system.
3.Training of health care professionals particularly doctors, mainly psychiatrists and neurologists in improving their diagnostic skills for early identification.
What was the defining moment that led you to this innovation?
The whole idea evolved over a period of more than two years. In the late 80’s when my father developed progressive loss of memory and behavioural problems, I was at a loss to understand the reason. Even after getting a diagnosis; it took several months to come to terms with the disease. Still I wasn’t able to do much, because I was staying almost 100 kms away from my ancestral home. I was feeling guilty that I was unable to help him and my mother who was doing most of the care giving. Medication some times used to make the situation more complex with side effects. Providing services for children with disabilities, particularly mental handicap was an area, I am quite familiar with I have substantial experience in the field. My efforts to get help from my colleagues in Psychiatry and Neurology didn’t help very much in dealing with my father’s condition. In fact there were very few who showed genuine interest. In the midst of all this confusion and trauma, a thought that flashed through my mind, why not use the expertise and attitude in looking after children with mental handicapp be used to help people with another disability of a different age group. I also realised that it has to be done in a way that not only my father but a larger community get the benefit. This had been the defining moment, which changed my life that led to the creation of Alzheimer’s and Related Disorders Society of India.
Tell us about the social innovator behind this idea.
Apart from being a medical doctor who has worked both in Asia and Africa,i have always been involved in the social side of any issue.to begin with throgh Tropical health foundation of India,the NGO i started in 1986,I got opportunity to understand differnt aspects of disability.All the problems family faces,be it social ,economic,financial.These are areas we as medical doctors often do,nt understand.Years of working with disability gave me platform to launch a major initiative in another form of disability.As iI moved on ,I realised that there are several similarities.that gave me the strenghth to go on.
As an individual I have always belived in finding solutions from out of the box thinking.Iam always willing to take risks in life.Iam also perseverant,a quality that I inherited from my father.
I strongly belive in net working.This too helped me in my work in the field of dementia.
How did you first hear about Changemakers?
Email from Changemakers
If through another, please provide the name of the organization or company
Not Applicable
 | Jacob Roy Kuriakose added this idea to their favorites. - 115 days ago. |
| Jacob Roy Kuriakose added this idea to their favorites. - 115 days ago. |
 | Jacob Roy Kuriakose updated this idea. - 116 days ago. |
| Jacob Roy Kuriakose updated this idea. - 117 days ago. |
| Jacob Roy Kuriakose updated this idea. - 118 days ago. |
| Jacob Roy Kuriakose added this idea to their favorites. - 118 days ago. |
| Jacob Roy Kuriakose updated this idea. - 118 days ago. |
| Jacob Roy Kuriakose updated this idea. - 118 days ago. |
| Jacob Roy Kuriakose updated this idea. - 118 days ago. |
| Jacob Roy Kuriakose updated this idea. - 119 days ago. |
Take action: |
||
|
share this entry |
add to favorites |
|
|
discuss |
||
Quick Translate:
This Entry is about:
Links:
- 546 reads