Fight against dementia: Awareness programs in Mumbai

Fight against dementia: Awareness programs in Mumbai
ON DECEMBER 14TH, 2010

link : All Caregiver Voice at http://dementia-care-notes.in/sailesh-interview/


Sailesh Mishra gave up his well paid marketing job in the corporate sector in 2004 to work full-time in the area of elder care, Alzheimer’s and development of less fortunate children. He is based in Mumbai. Because of his passion to work with elders he has started a social enterprise, Silver Innings, and later formed an NGO called Silver Inning Foundation, and also began a forum called People for Social Cause. Sailesh is actively involved with ARDSI and is Founder Sec. of ARDSI Greater Mumbai Chapter. He is also a consultant and advisor to other NGOs.

Sailesh utilizes his marketing and PR skill to market the issues of our elders through various forums and ICT /social Media. In this way he tries to reach the young and the old to sensitize and empower civil society with regards to elder care. As he works in elder care, he is very concerned about dementia and conducts regular awareness programs for it. He describes some of his experiences in the interview below.

For whom do you conduct these awareness programs?

Every year, in September, we go in for highly visible programs for a week to coincide with the World Alzheimer’s Day function. But this is not enough for the “Fight against Dementia.”

In addition to that, we try to arrange programs all through the year at various locations over Mumbai. Our target audience is mainly the elderly and their family members.

To effectively reach this audience, we work through local associations that have a sizable number of senior citizens, such as senior citizen clubs, bhajan mandals, and mahila samitis. Many of these associations are part of FESCOM (Federation of Maharashtra Senior Citizens), and our organization, Silver Inning Foundation, is also a member of this federation.

Many associations are very active and meet every week or every month. We volunteer to come for these meetings and present topics related to the elderly. We get audiences that range from 20 persons to as many as 120 persons.

Please describe the structure of your program.

Typically, our program spreads over two hours.

We use the first hour for an interesting audio-visual presentation where we explain Alzheimer’s and dementia to the audience. This includes showing them the excellent story prepared by Dr. Samuel which describes a case of an old lady who starts showing the symptoms of dementia.

The next hour is reserved for audience questions. If some of the persons present are interested, we also conduct a mini-screening for them. We also distribute reading material to the audience, and set up any further meetings for those who want them.

What are your observations regarding awareness of dementia?

The programs confirm the fact that awareness of dementia and Alzheimer’s is very low in India.

Some people do not understand what “Alzheimer’s” is. Given that the name does not sound Indian, they think that this is some problem/ disease found only in the Western countries and has nothing to do with India. Many have never even heard the name.

On the other hand, there are others who think that this is something really horrible, worse than AIDS, and they are very frightened of the name. Such people even hesitate to attend the talks. You know that there is stigma attached to anything people consider a mental disease.

…awareness is essential for early diagnosis, and this lack of awareness delays any help the patient or family can get
Poor awareness is very unfortunate, because awareness is essential for early diagnosis, and this lack of awareness delays any help the patient or family can get.

As our focus is to reach out to as many elders as possible, we present dementia in the context of topics that concern elders, so that the audience is able to understand and participate effectively.

When you explain dementia to an audience of the elderly, do some of them get concerned that they may have dementia?

Yes, this is a common issue we address.

Everyone occasionally forgets things. Many members of the audience are concerned about whether their memory loss is a sign of dementia. We explain the difference between the memory loss that is normal, and the memory loss that is indicative of dementia. For example, many of us misplace our keys, but we are able to remember later where we put them, and such forgetting is normal. The memory loss found in dementia is more severe and affects the ability to do things. It is the behaviours and personality changes that make the situation worse.

While explaining the various warning signs of dementia, we also emphasize that we are not doctors. Our role in these programs is to spread awareness, and not to diagnose whether or not a member of the audience (or their relative) has dementia. Definitely, we are not authorised to label someone as a dementia patient. For people facing problems, we encourage them to contact the nearest psychiatrist if they (or their family members) display any of the symptoms we have discussed.

…no one should assume that someone has dementia and “label” a person as a patient without proper diagnosis
We are very clear that no one should assume that someone has dementia and “label” a person as a patient without proper diagnosis. We suggest that people consult a doctor, and maybe take a second opinion, to get a diagnosis. We have with us an area-wise list of Mumbai psychiatrists that people can use, depending on the locality where they stay.

We also caution people from consulting too many doctors, or changing doctors in the hope that there will be a cure. There is no cure for dementia.

How does the audience respond to the fact that there is no cure for dementia?

Most of our audience is in the age-group of 60 to 70, and when they hear dementia described, and also hear that there is no cure, this can be very frightening for them. In fact, we have seen many families even ignoring the problem. They don’t give medicine as it does not help, and many of them want to put the person with dementia into an old age home.

So they ask: how can dementia be prevented?

While there is no definitive way to prevent dementia, there are things that elders can do to remain active and healthy. We explain many such ways to the audience. Here are some of the suggestions we make:

Do activities that keep the mind active, such as the puzzles and crosswords that come in the newspapers
Continue to do things that you did earlier, before retirement. For example, if you were an accountant, continue to maintain your home accounts
Do volunteer work to remain active and useful, and to meet people
Have an active social life
Maintain your health by exercise and healthy food habits
One very important way of stimulating the mind is to do something that is different from what one is used to doing.
One very important way of stimulating the mind is to do something that is different from what one is used to doing. For example, if someone drinks tea every morning, that person can drink nimbu pani on a few days instead, or have coffee. If someone is used to climbing by putting the right foot on the step, he/ she can try using the left foot first instead.
We also teach many small exercises, such as rubbing hands, to stimulate the brain.
We also describe alternate therapies that elders find useful, such as music therapy, and reflexology.
There are many such tips, and I suggest you attend a meeting to hear more about them. In fact, people are interested in music therapy specially the Indian spiritual one.

What are the other common concerns you encounter?

In some cases, some members of the audience already have a patient at home. Their questions are related on how to handle challenging behaviour. Common examples of behaviours that stress family members are when a patient repeatedly insists that he/ she wants to go to the toilet, or keeps asking the same question again and again.

We explain various caregiving methods for communication and for handling difficult behaviour.

…love and care is the only medicine for the person and the family…
One thing we make sure we tell people is that love and care is the only medicine for the person and the family. Also we try to explain to them that there is life after Alzheimer’s–because people can still sing, dance and enjoy life. This positive side was explained to us by Prof Cathy Greenblat.

You had mentioned that you also distribute material to the audience. Could you tell us about that?

Yes, we distribute material and also do various follow-up. Our awareness programs are not just talking about dementia for a couple of hours; we see our role as resource persons in this area.

The booklet we distribute explains the ten warning signs of dementia and has Mumbai specific resources, such as helpline numbers, and other resources that people may find useful.

In fact, in the next few months, we are launching India’s first Elder Resources Director – ‘Mapping Of Services’ for Elders for Mumbai MMRDA area. This will be a boon for many Senior Citizens and their family members.

Sometimes we also coordinate with other concerned organizations so that a one-minute screening is made available as part of the awareness program. While this is not sufficient or rigourous enough for a diagnosis, it helps the audience get a better understanding of what dementia symptoms are, and to decide whether to go to a doctor.

We also have a list of psychiatrists for each area that people can use to identify the doctor to consult.

Sometimes, some of the audience members are not comfortable talking to us in front of others. In case they want to discuss more about their specific concerns (or concerns related to someone else at home) we also do follow-up home-visits at a nominal cost.

One major need people have is that of trained attendants for patients at home. While we are not in a position to provide such attendants, we do give people the contact for various bureaus in Mumbai that supply attendants.

We also offer to train family members and attendants on caregiving for dementia patients.

We hope that with such programs, awareness of dementia will increase and people will be able to get diagnosed earlier and get help for both the patients and their families.

Silver Innings is working towards creating Elder Friendly World where Ageing becomes a Positive and Rewarding Experience.

Thank you, Sailesh.

Sailesh can be contacted at his e-mail:silverinnings@gmail.com and via Silver Innings and through his forum, People for Social Cause Blog (links: http://peopleforsocialcause.blogspot.com and http://silverinnings.blogspot.com/ ). He can also be approached via Facebook and Twitter.

World Alzheimer's Awareness Week 2010 - Mumbai, India.

Dementia - It’s Time for Action!

On the occasion of World Alzheimer’s Day on 21st Sep 2010 ARDSI (Alzheimer's & Related Disorders Society of India) Greater Mumbai and Mumbai Chapter in association with ‘Silver Inning Foundation’ is proud to Announce One Week Programme to create awareness about Dementia and Alzheimer’s in city of Mumbai. All over India ARDSI and its networking organisation will hold awareness campaign.

Tentative Programme detail:

1) Fri 17th Sep 2010: 'Brain Game and Keeping Alzheimer's Away' at Cosmopolitan School , Mira Road. 5.45PM To 6.45PM

2) Tue 21st Sep 2010: Memory Camp at Kisangopal Rajpuria Vanprashtashram (old age home) , Uttan, Bhayandar west . 10am to 1pm

3) Tue 21st Sep 2010: Release of info booklet “10 Warning Signs of Alzheimer's" in Mumbai

4) Sat 25th Sep 2010 : Talk on - "Know more about Alzheimer's" at Vanita Samaj ,near Mayor Bungalow, Shivaji Park, Dadar 5.30pm to 6.30pm

5) Sun 26th Sep: Awareness Camp at Holy Family Hospital, Bandra

6) Tue 28th Sep : Talk on "Help for Alzheimer's Family Members" at ( HELP) Health Education Library for People, National Insurance Building, Gr Floor,206, Dr.D.N.Road, Mumbai - 400 001. 4.30pm to 6pm


Contact: Sailesh Mishra , Founder President, Silver Inning Foundation
Founder ARDSI Greater Mumbai Chapter , Mobile:9987104233/ 09819819145 Email: silverinnings@gmail.com

Link: http://silverinnings.blogspot.com/2010/09/world-alzheimers-awareness-week-2010.html

Top 50 Online Resources for Families Coping With Alzheimer’s

Information About Alzheimer’s Disease


13. Alzheimer’s Disease – Symptoms Treatment and Care : Articles about Alzheimer’s disease and other resources are included here.

14. holisticnutritionandneurology.blogspot.com : Doctors discuss the connections between nutrition and neurological disorders, including Alzheimer’s.

15. EverydayHealth.com : Everyday Health provides suggestions and contact information for various Alzheimer’s support organizations.

16. The Tangled Neuron : Mona Johnson provides the latest updates on Alzheimer’s research, written in a way that families can understand.

17. Alzheimer’s Association : The Alzheimer’s Association provides excellent resources on their website.

18. alzheimers247.wordpress.com : There are several good articles about Alzheimer’s Disease on this blog.

19. PBS.org: The Forgetting : This is a wonderful companion website to the gripping PBS documentary, The Forgetting, which originally aired in 2008.

20. Partnering With Your Doctor: A Guide For Persons With Memory Problems and Their Care Partners : This excellent online brochure is provided by the Alzheimer’s Association and helps patients and their caregivers know how to work with the doctor.

21. Alzheimer’s Reading Room : This is the #1 blog online in the category of Alzheimer’s and Caregiving. Over 1,500 articles deal with topics from anxiety to behavior problems.

22. AHAF : You can order free brochures from the American Health Assistance Foundation on this site devoted to Alzheimer’s research.

23. Brain Today : Two doctors and a medical professional blog daily about news in the world of neurosciences and Alzheimer’s Disease.

24. About.com : Coping With Alzheimer’s : About.com has many excellent articles about ways to cope with a diagnosis of Alzheimer’s Disease.

25. Dementia News : A British website that combines many different resources about the effects of dementia, including Alzheimer’s.

26. Mayo Clinic: Alzheimer’s Disease – Coping and support : The Mayo Clinic offers advice to both the Alzheimer’s patient and the caregiver. Subscribe to the free newsletter.

27. Coping With Daily Life and Alzheimer’s Disease : Alzheimer’s patients who are still aware of their condition and that they are losing their mental capacity have many questions as they wonder how to cope with the disease.


from : http://radiologydegree.com/top-50-online-resources-for-families-coping-with-alzheimer%E2%80%99s/

Senior Citizen National Protest Day, August 16, India.

'Senior Citizens National Protest Day' 16th August- 2pm - 4pm. Come one ,Come All and support our Elderly.

halo (march to)AZAD MAIDAN !!!!!!!!!!!!!!! Mumbai : 'Senior Citizens National Protest Day' 16th August- 2pm - 4pm. Come one ,Come All and support our Elderly.

It’s sad to note that NPOP was formulated in 1999, but till date it has not been implemented by Central Govt. / Pan India, due to various reasons including lack of political will. Various NGO's and activist have been advocating its implementation and review. In this regards a ‘National Protest Day ‘is observed by all NGO’s, Senior Citizen associations/federation and Senior Citizens to press their demands on 16th August 2010.

During these 11 years the world has changed, there has been significant demography change in India's population due globalization and improved medical facility and lifestyle. The fall of joint family system and rise in nuclear family system has brought new dimension to the care and welfare of Elderly. Population of people above 60 years of age is estimated to be 96 million in 2010.The Life span has increased by 60% in 60 yrs.

India has today second largest population of Senior Citizens. There is sharp increase in population of Young Old 60yrs to 69 yrs and Old old 80+. Due to this demand and needs of various age groups have changed. Now it is time for civil society and government to rethink their strategy to address the needs of Senior Citizens.

After 63 years of Independence and democracy experiment there are segments of people who are not treated at par with others, there is injustice and discrimination towards them. One of the most neglected and ignored segment is of Senior Citizens. Elders are not considered as part of mainstream, there is unjust treatment to those who gain 60 years of age, and they are suddenly considered ‘Retired’, good for nothing. Government and Civil Society are not bothered of this experienced and skill group of people.

Read More:http://silverinnings.blogspot.com/2010/08/chalo-march-to-azad-maidan-mumbai-on.html

Rules and regulation of the blog

I remind all of you that this blog is dedicated to the topic of Alzheimer disease and related disorder, just to inform, discuss and debate. Non commercial,non political, non religious one.
No cure can be proposed, no medication, no industry is supported. The blog is not responsible for any commercial enterprise or proposition to anyone and doesn't support such attempt.

The silver innings - OLD IS GOLD

Sunday 11 July 2010

Integrated senior-citizen townships are offering tailor-made and hassle-free living for retired Indians, says Sushmita Biswas.

Every morning, 72-year-old Mani Bharucha likes to go for a walk with her friends. A single woman, she’s chosen to live 90km away from the hustle and bustle of busy Mumbai life at the Dignity Lifestyle (set up by Dignity Foundation) Retirement Township in Neral near the hill-station Matheran. After the walk she tends the plants in the small garden attached to her cottage. She particularly loves the monsoons in the hills when the landscape turns a verdant green. “The quality of life is much better and there are absolutely no restrictions on our lifestyle,” she gushes.

Bharucha is among the growing number of senior citizens who are opting to stay in senior-citizen townships coming up in different corners of the country. And no, these are not old age homes but integrated townships for people aged 55 years and above, where the key selling point is senior living.

The living conditions are specially tailored for older folks with ultra-spacious, wheel-chair friendly rooms with anti-skid flooring and touchscreen systems. In addition, there are multi-cuisine restaurants, libraries, club houses, golf courses, wellness centres and spas. Of course, there’s geriatric care at hand and trained staff for housekeeping.

So you can perk up with a brisk walk, or enjoy an Ayurvedic massage, sweat it out at the fitness centre or engage in community development projects.

Who are the target buyers? Anybody who is looking at retirement (young retirees 55 years onwards) or the already retired or those who need assisted living can choose to stay in these homes.

Perhaps, it’s little wonder that the elderly parents of NRIs, retired bureaucrats, bankers and businessmen are increasingly finding their space in the protected environment of a retirement home.

“Senior-living homes have immense potential. Though it’s a western concept, and still in its infancy in India, developers need to take it to the next level complete with ultra-modern and hassle-free facilities,” says Saumyajit Roy, assistant vice president, Jones Lang LaSalle Meghraj,

According to a recent report by Jones Lang LaSalle Meghraj (JLLM), in India there are over 81 million elderly people. The figure will rise to 177 million by 2025 and by 2050 it will be about 240 million. Adds Roy: “After you retire from the frenetic pace of life, there’s no need to feel left out. Retirement townships are increasingly being favoured by elderly people whose children settle in different parts of the country or abroad and cannot visit them too often.”

Here’s looking at some of the places where the elderly can retire to.


Some Retirement township in India:
RENAISSANCE,West Bengal
VIVARA RESIDENCES,Goa
DIGNITY LIFESTYLE RETIREMENT TOWNSHIP,Maharashtra
UTSAV,Rajasthan
MELUR MEADOWS,Chennai
RAKINDO,Coimbatore