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Swapna Kishore (PGP-81) has been working in the domain of dementia care since 2008. The resources she creates are used by thousands of caregivers and others every month. IIMA Alumni Association Bangalore Chapter (IIMAAA-BLR) talks to her about her work.

 Tell us about your work in dementia care:

swapna kishore I create online resources in English and Hindi related to dementia care in India and make them available through websites, blogs, YouTube, and SlideShare. I also support persons who contact me, and share information and suggestions according to my ability.

 The thrust of my work is to help people be better informed about dementia and related care, so that they can handle situations that arise when someone in their family gets dementia. I want to help the person with dementia and the family to have a more fulfilling and less stressful life.

 What made you get involved in the dementia domain?

 I began this work because I faced several challenges as a caregiver for my mother, who had dementia. I thought of contributing to the dementia care domain in the hope that others in similar situations may be spared some of the problems that I faced.

 Please tell us more about your mother's care and the challenges you faced.

 The nature and impact of my mother's care kept changing as her dementia progressed. In the initial years, I needed to understand how dementia was affecting her and accordingly change my way of supporting her. I also needed to make people around me understand her problems so that they didn't act insensitively when they met her. My mother was disoriented, prone to repetitive behavior and misunderstanding others, and needed help even for simple daily tasks. She was prone to doing things that harmed her. Her condition kept getting worse and someone needed to be with her all the time.

For the last two-and-a-half years of her life, my mother was frail and bedridden, and she suffered from repeated infections. She could not swallow food properly; she could not even turn in the bed without assistance. She could not communicate. We had to keep her comfortable and remain constantly alert for signs of infection or pain, so that we could call the doctor immediately. It was heart-breaking to watch her deteriorate. Every setback was scary. The possibility of an emergency was like a sword hanging over my head all the time.

One additional challenge in my case was that my mother had always been very particular about body donation. In her words, she didn't want any part of her body to be "wasted" after her death. Since the window for such donations is just a few hours after death, and since as next-of-kin I would be required for such donation, I had to remain available within summoning distance 24x7. So even the very occasional breaks I took from caregiving work were limited to a few hours and always very close from home. Fortunately, when the end came, I was able to donate her eyes, brain, and body the way she had wanted.

Tell us more about your choice of content creation as your mode of contributing.

Most forms of dementia are irreversible and progressive. Dementia stretches over several years, and persons with dementia become increasingly dependent and finally die. Available medicines cannot slow dementia's progression or reverse the damage in the brain. Some medicines relieve symptoms in some persons, but they don't work for everyone. The quality of life of the person with dementia thus depends mainly on how care is managed. Unfortunately, caregivers are ill-equipped for providing such care because they do not get the information or support that they need. They feel isolated and stressed.

When I thought of contributing, I was already home-bound because of my mother's situation. So I explored what I could do from home. Knowing how isolated most caregivers felt, I thought sharing my experiences and thoughts could help, and I began blogging.

As a result of my blog, other caregivers started contacting me and talking about their experiences. Our interactions confirmed my impression that we needed better dementia care material. Most existing dementia material is created in other countries; it assumes much better institutional support and uses examples and descriptions suited for those countries/ cultures. We face problems when we try to understand and apply such material in India.

I therefore began preparing India-centric online material, an activity feasible even for a homebound caregiver. The result is the website Dementia Care Notes, my blog, videos, and the other English and Hindi material.

Who else were involved with your work?

I have created my material based on a range of inputs. To get multiple perspectives and ideas on possible coverage I read up on relevant topics, attended courses, and interacted with volunteers and caregivers. People have been very generous in sharing their experiences and thoughts, including problems they faced and how they handled their situations. All this has improved my understanding and ability to generate content.

In terms of writing the content, making technical decisions, and creating the site, I have handled the work alone.

Are you continuing to focus on content creation? What future modes of contribution are you considering now that your mother is no more and you are no longer an active caregiver?

I continue to focus on creation of online material related to dementia care in India.

My current scope is somewhat broader than my initial intention of preparing material for caregivers in India. I now also create resources for volunteers, and share thoughts on other topics like the need to improve dementia awareness in society at large.

I believe that making relevant content available online served a currently under-served audience, especially in the Indian context. I get contacted by homebound caregivers who cannot reach organizations, and persons who have no local source of information or support. I also get contacted by persons who are thinking of starting some venture related to dementia support; they want information and suggestions and don't know how to start.

All around us, we see more and more people using mobile phones and turning to the Internet. Phones and laptops are used for entertainment, social interactions, buying, and information and services. If people need information on dementia, they will expect it on the Internet. Generating content takes time, and so we need to anticipate this demand.

In terms of my future plans, I hope to keep my material useful and up-to-date, and may also consider new types and formats.

On the other hand, I do not plan to provide physical services or facilities like providing trained attendants or starting day care or respite care, etc., and I will not partner with anyone doing so. Many volunteers and professionals use my material to understand the family caregiver perspective of dementia, to train their staff, and to help caregivers who approach them. This background mode of supporting them works well for me, because I can contribute meaningfully and yet remain free of the pressures and frustrations of organizational dynamics.                                                       

What were your challenges when you started and what are your challenges now?

One initial challenge was the lack of a model for online content creation in a domain with such poor awareness. I had no basis for setting targets or estimating effort, and no peers for brainstorming. I opted for an incremental approach of releasing small units of work, and constantly restructuring them based on what I learned.

Another problem was the lack of professionals I could use for subcontracting work, such as Hindi translation. Several attempts at using professionals and volunteers only resulted in stilted, unfriendly text, often ridden with mistakes and ambiguous phrases. Checking the contracted work was time-consuming and frustrating, and I decided to acquire the skills required for my work so as to remain flexible, independent, and productive.

Currently, my challenge is ensuring that my work continues to reflect what I learn and also incorporates the suggestions and data I get. A lot of effort goes in staying connected with the community, getting updated from books, blogs, courses, etc., and then deciding how much of it is relevant for updates. Though I know many persons in the dementia domain in India, and though they agree that we need suitable content, they do not adopt content creation or online distribution as their sphere of contribution, and so I still lack peers for brainstorming. 

Do you have something to say to youngsters currently working in the corporate sector who feel an urge to do something entrepreneurial in the social sector, but are afraid of the risks that come with it?

Moving from a corporate job to starting a social sector venture is a major step. Passion matters, but such a switch also requires learning about a very different domain and work environment. The definition of "success" may need adjustment with respect to money, visibility, achievement, etc., and may include managing expectations of family and others.

I am probably biased here, but in my opinion, such switches are easier now because digital media provides an accessible and robust way of exploring new areas. It is possible to build up knowledge and to connect with a new set of peers before taking the plunge. They can build competence and develop realistic expectations and plans.

It is also possible to participate and add value in the new area while still learning the ropes. Such contribution may be fulfilling, and the person may even decide to continue with a corporate job and contribute in leisure time.

In one respect, switching from the corporate to the social sector may also be easier because the current employer may not mind if an employee spends free time contributing to social causes. Employers may even encourage such participation through their CSR initiatives.

I'd like to point out that every social cause needs work on multiple fronts and at multiple levels. It needs advocacy and interactions with policy makers, it needs persons running social ventures and providing services, it needs persons working on awareness and information, and it needs field workers and persons willing to travel to remote areas. Each of us has to find what sort of contribution matches our level and type of concern, ability, personality, constraints, etc. Our perspective may evolve with time, but selecting a suitable mode affects the satisfaction we derive and the difference we can make.

How have the years at IIMA helped you with your work? Which professors/ courses have been most helpful for the work you do currently?

When I was in IIMA, way back in 1979-81, my interests lay in the "quanti" side. I chose electives related to linear programming, production and operations management, computers, information systems, etc., and did not opt for electives on entrepreneurship or developmental work. I don't even remember whether we had such options. The subject matter I studied then has very little direct relation to what I do now.

What I find particularly valuable from my IIMA days are analytical skills that the case-study method inculcated and the clarity of thought and the articulation of the faculty. In particular, I remember Professors V Mote, M Mallya, P R Shukla, and M N Vora.

Tell us something about other things you do, in addition to your dementia work.

I love to take long walks, to read, and to write.

I have been publishing professional books for years. When I became predominantly home-bound because of my caregiving responsibilities, then as a form of catharsis/ escape, I also began writing fiction. A list of my published works is available at this link. I also co-authored a business novel: "Aligning Ferret."

Please share some links and data from your dementia-specific work.  

Sure. But before I list them, let me reiterate that in case you have any questions on dementia or related care, please don't hesitate to contact me at cyber.swapnakishore@gmail.com

 My main sites are:

English website: Dementia Care Notes

Hindi version: Dementia Hindi

The English website, Dementia Care Notes, is designed for dementia caregivers in India and provides information on dementia and related care in a structured way. The site includes detailed caregiver interviews. It includes links for books, videos, resources, etc. Dementia Hindi is its Hindi version.

Additionally, I have other sites that I use to share documents, videos, and my personal experiences as a caregiver and as a volunteer. The main ones are:

Personal blog to share experiences as a caregiver/ volunteer (currently over 200 entries)

English/ Hindi videos with suggestion/ information for dementia care :

https://youtu.be/GMcfHdq_ipw
https://youtu.be/hZ2PWCAJJb8
https://youtu.be/EXvcuWO86OI

English/ Hindi videos sharing my personal experiences as a caregiver :

https://youtu.be/GMcfHdq_ipw ;
https://youtu.be/hZ2PWCAJJb8 ,
https://youtu.be/EXvcuWO86OI ;
https://youtu.be/g-JUaI-lLLs 

Presentations/ documents on dementia and caregiving : 

Resources for volunteers looking for areas to contribute

The links above will take you to detailed discussions on various dementia care topics. As a sampler, I'll list some material that provides an introduction on what dementia care involves, and how some suggestions can help cope with the situation. Here it is.

Two presentations about the caregiver role and realities:

Introduction to caregivers

and

Caregiver Issues and Challenges

A document that provides a simple explanation of dementia care (from the slideshare site): Caring for someone with dementia

 

Videos on suggestions on wandering, one of the most common problems faced in dementia: View on the website page: Dementia and Wandering: suggestions for family caregivers or directly on this

 

If you have even a fleeting interest in dementia, do check out the above links. In case you have any questions on dementia or related care, please don't hesitate to contact me at cyber.swapnakishore@gmail.com

I'd like to thank everyone at the IIMA Alumni Association Bangalore Chapter (IIMAAA-BLR) for this opportunity to share my work.

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