Fight against dementia: Awareness programs in Mumbai

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. [note]

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 behaviors 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 behavior. Common examples of behaviors 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 behavior.

…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.

« Remote caregiving: an arrangement, and issues faced Father thought I wanted to kill him: a daughter talks of her father's dementia »

Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

One thought on “Fight against dementia: Awareness programs in Mumbai”

  1. Excellent interview. I came to know a lot more about Sailesh, my good friend, through this interview. His follow up efforts after initial Dementia awareness programs are indeed laudable. The directory he is proposing on resources will be most useful.

Comments are closed.