August 22, 2011

tion bringing awareness

Issue No. 18

The Memory People Page

This week we are pleased to feature an interview with Sailesh Mishra, Founder and President of Silver Inning Foundation, a Non Profit organization dedicated to helping the elder population age successfully and with dignity, and Founder of ARDSI (Alzheimers Society, India, Greater Mumbai chapter). Sailesh is also an Advocate for Alzheimers Awareness and has headed up many programs for those with dementia, including memory camps, support groups,

one person at a time

helplines, and home visits for counseling, in his city of Mumbai, India. He is now also part of the National Consultation for the National Dementia/Strategy Report. In a city of 21,000,000 people, the need is overwhelming for correct diagnosis, care, and treatment. Sailesh, how have you personally been touched by Alzheimers? My first experience with Alzheimers came when I met a woman named Asha, who had this disease. I already had a heart for those with AD/dementia issues and problems. Asha was 80 years old, and in the 2nd stage of this disease. She was a loving person, very nice. She always talked about wanting to go to school, and initially I tried to convince her that there was no school, but then I started paying attention to what she was needing. So, I asked her to pack her books and a school bag, and then I took her around the care facility and then back to her room. She thought she had come home from school; she felt better, and was happy.

She thought she had come home from school; she felt better, and was happy.

Asha used to ask me to sing a song by a famous Hindi singer, Mukesh, and when I did, she would feel better and would go to sleep. That became our routine. This so profoundly touched me, the innocence and childhood in the elderly that have this disease. 6 years later, my first work in the social sector was in an Aging Care Non Profit Organization, where I was the Chief Facility Officer. We built a 24/7 care dementia center in a Retirement Township. While heading up this township I interacted and stayed with AD/dementia patients.

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August 22, 2011

Issue No. 18

It sounds like your relationship with Asha really touched you. Did it encourage you to begin working in the field of helping those with Dementia? And what do you do now, in helping those with dementia? Yes, this experience with Asha helped me to see the problem, and understand the need to address this issue. This was one of the inspirations for me to start my own organization, Silver Innings. I sensed the urgent need for proactive and young peoples involvement in advocacy and networking for the cause of helping Senior Citizens. Over the last 6 years, with the help of like-minded people, and with our commitment and passion, I am now part of the National Consultation for the National Dementia Strategy/Report. We use social media as an important tool to address the issue, which includes Facebook, Twitter, Linkedin, and a daily online newspaper for AD/Dementia. We also work in association with ARDSI, the Alzheimers Society of India. We launched a website, www.silverinnings.com in April of 2008, a compilation of information from about the world. Then we began Talks and Presentation with our networking partners and Senior Citizens Associations. Once a month we do Memory Camps and create awareness with print media. We started a once a month support group, and an Elder Helpline for referral services. Around 25% of all our calls are related to AD/dementia. We also started Home Visits for counseling, and a paid service, DMS Dementia Management Services. Through that we host and partner to arrange conferences and a Dementia Training Workshop once a year. I speak at national conferences, have printed a booklet 10 Symptoms of AD/Dementia and am now a part of a pilot international study with Columbia University for Stigma attached to Dementia in Urban India. You are doing so much to help those in your country in their struggle with this disease. Sailesh, what do you think is the biggest need for those who are patients, or caregivers, where you are? Is it Awareness? Are people who have this afraid to talk about it?

Our work is just a small drop in the ocean, seeing the magnitude of the problem.

Our work is just a small drop in the ocean, seeing the magnitude of the problem. In India, there is a lack of Awareness among the medical professionals and civil society. It is felt that memory loss is just a part of aging, so we see very few people in the early stages of this disease. They come to us in the moderate or severe stage. They need someone who can understand them, be with them, and listen to them. There is little help for them, as medicine plays such a small role. Caregivers and family members need to be able to find medical professionals to diagnose and treat their loved ones. They need bedside assistance, and volunteers to help them. They need organizations, people who can explain the disease and how to deal with it, as the doctors dont say much. They end up looking for alternative therapies, for resources and help from people who will listen to their day to day concerns.
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August 22, 2011

Issue No. 18

They want trained professional caregivers, 24/7 centers, and Day Care centers. The cost of medicine and diapers are high, so theyre also looking for relief/subsidies. They turn to internet resources and printed materials for help. In my city of Mumbai, which as a population of 21 million people, we are the only service who provide Home Based counseling. We provide referral services and as I said, Dementia Management services, in a pilot/trial stage. Were looking for funding so we can start our own Dementia Day Care and 24/7 Home Care services. One of the major problems is that people dont recognize the symptoms and then when they do notice something is going on, they dont know who to approach. Because the family physicians are so unaware of this, they think the person has gone mad or is having some evil soul harassment. If they are asked to go to a psychiatrist, they feel its a mental case and are terrified and stigmatized, and then they dont want to discuss it with relatives or neighbors. Also, because there is a lot of negative publicity attached to those with Dementia, people do not come out about it. To make things worse, many times, because families know that there is no cure, and not much help available, they dont come back to us, and they stop going to their doctor altogether. So Awareness is so greatly needed there also.. Sailesh, what do people with early stages there do when they start the symptoms? Who takes care of them? Do their families stay with them and help?
Mumbai, India

Well, that is the problem. As I said earlier, we hardly know about the early stages. When a person realizes they are having symptoms, they try to accept that it is anything but this disease. They are in denial. They want to believe that its just aging catching up with them. Many times its the 3rd party, a family member or friend that notice changes in them. They will initially make a note of it and discuss it with them, but again, due to lack of Awareness and knowledge, they hardly pay attention.

Then, when things are really going wrong, like they are getting lost and their behavior changes, their family panics and they take their loved one to the doctor. If theyre lucky, the doctor would know something about AD/Dementia, otherwise, they just tell the family that nothing is wrong, theyre just aging. We work with Psychiatrists and Neurologists, so that when they get a person come to them with these symptoms, they will send them to us for counseling and psycho-social care.
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August 22, 2011

Issue No. 18

In the initial stages, mostly its the family the spouse or daughter or daughter in law that provides care.. very few sons. In India we still do have traditional families, especially in the semi urban and rural areas, so families are there to support. And we dont have many Care Facilities, only 3 good dedicated facilities for AD/Dementia. Old age homes just wont admit them, and its a stigma to send a loved one with this to a facility. In urban areas, the situation is different; here, the couple has to work for survival, so they take help from professional caregivers, but they are either not trained, or simply not there. Some cities do have Dementia Day care, around 6 all over India. We do think Day Care is the best option, but due to high real estate costs, and the costs of logistics and human resources, this is difficult to implement.

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Sailesh, it is truly amazing to hear of the need all over the world, for those who are walking with this disease. Every region, every culture needs awareness. Thank you so much for sharing the wonderful work you are doing for so many in India.

We Have the Best Experts Posted by Rick, July 13, 2011 I like to think we have the best experts in the field of Dementia, Alzheimer's Disease, etc. here on MP. We may not be Doctor's, Neurologists, Caseworkers, or Counselors, but we have far more experience than any of these professions. You see, here you get advice from patients. One can be smarter, more educated than I in many ways. But ...no one can offer the information you get here, from patients, and caregivers. We bring Awareness, and offer Support. And we do it better than anyone or any site on the internet...I am so proud to be a part of what we are doing here...

Friendship doubles our joys and divides our sorrows..

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