Advocacy in India

Mike Splaine, Director of State Policy and Advocacy Programs, recently traveled to India to meet with the Alzheimer’s and Related Disorders Society of India. Mike shares some of his experiences about the trip below.


It is hard to imagine meeting the challenge of Alzheimer’s disease in a developing country with limited infrastructure. Alzheimer’s and Related Disorders Society of India (ARDSI) is doing just that. I had the privilege of joining our colleagues from ARDSI as guest faculty for their annual conference in Kolkata and then in Delhi for the final consultation meeting to design a national Alzheimer strategy for India.

The theme of the meetings was building dementia “solidarity”:


* Solidarity within the Alzheimer community that has slowly developed in India in the past 17 years of scattered local organizations across a sub continent.



* Solidarity between sectors of the community such as researchers, caregivers and hospitals.



* Solidarity to work together with other non-governmental organizations and government to craft a real strategic approach to the challenge of dementia.


India is huge—1.5 billion people (and 500 million cell phones), and diverse culturally, medically, and socially. It is the epicenter of the rapidly growing challenges of Alzheimer’s disease – by 2020 an estimated doubling of persons affected, to over 6 million. This reflects global trends. We estimate that 60% of persons with AD worldwide will live in a developing country by 2020.

I shared some of our U.S. story with state Alzheimer plans and also our tools and experience in building an approach to advocacy and public policy. Though India is a democratic nation like ours, political traditions and conventions are surprisingly different.

The local leaders were hospitable to a fault, friendly and – like Alzheimer advocates I have met all over this country – passionate and committed. That said, every time I got comfortable I was reminded of just how a different a place India is. For example only 2% of persons of 60 have any health insurance – and almost all of these have just hospital coverage and it is derived from their children putting them on a work based family plan!

The final product of these deliberations will be an India AD report to be released next fall, with facts, faces, promising practices and action recommendations. This will be a first from a developing nation. You can read more about ARDSI at http://ardsi.org.

Mike Splaine with P.G. Datta Ray of the Alzheimer’s and Related Disorders Society of India – Calcutta Chapter.

Alzheimer's Advocacy Forum

Our thanks to Kate Mulgrew, an outstanding Alzheimer’s advocate who effectively makes the case that we must act now to overcome Alzheimer’s disease.

Check out Kate’s opinion piece that was posted on CNN.com.

All of us can do what Kate has done. Talk to your friends, family, and co-workers. Write to your local papers and tell them why Alzheimer’s needs to be a national priority. Call the district office of your congressman and explain the impact this disease has had on your loved ones. It’s the many voices that together that will make the difference. Each conversation, each call, each letter matters.

Best of all, register to join us in Washington, DC for the Advocacy Forum. We’ll train together as advocates, discuss what needs to be done and how to make the case, and then we’ll do it. On the last of the three days, we’ll head to the Hill and make our case directly to our Senators and Representatives in Congress. Our advocates consistently tell us what a rewarding time they have meeting new friends and advancing a cause that means so much to them.

Learn more about the Advocacy Forum or sign up today! Together we can take action and change the course of this disease.

-Robert Egge