The dementia care related work I do

Below is a description of the work I do to support family caregivers of persons with dementia.

Summary: Simply put, I am a resource person on dementia care, available to other caregivers. I create online resources for dementia caregivers and try to provide them information and share caregiving experiences and tips with them. My focus is family caregivers in India who are involved in dementia home care. I do not affiliate myself with any organization*, and do not consider myself a dementia care expert or a social change agent or a mover/ shaker. Though I do use my experience to voice caregiver observations and concerns in various forums, I do not participate in lobbying or advocacy.

To elaborate, I focus on the following:

  • Keeping existing online dementia care resources up-to-date. I have already created a large body of online resources on dementia care in India, including an English website, Dementia Care Notes (over 125 pages), a Hindi website, Dementia Hindi (over 60 pages), a blog (this one, with around 200 entries), YouTube channels sharing dementia care videos and my personal caregiver stories, and resources and suggestions for other volunteers. (More complete listings available in sections: Dementia/ Care Resources for caregivers in India and Resources: If you want to help caregivers/ spread dementia awareness). I do periodic reviews and updates to these various resources, and try to ensure they remain usable and relevant.
  • Undertake self-imposed “projects” to add more online resources. I periodically undertake projects to create more online resources; these may include creating new English or Hindi presentations and documents, augmenting my websites to discuss some special topic or create new pages, adding blog entries, and so on. On a few occasions, I even write something for others, but this is rare . For these projects, I evaluate and select areas that I think caregivers may find useful and where I feel I can contribute effectively. My ability to undertake such projects depends on time availability, which is also impacted by my other commitments (unrelated to the dementia cause).
  • I respond to caregivers and concerned persons who contact me to understand dementia/ care in India, or to get suggestions or share ideas related to it. Because of my online visibility, I am often contacted by caregivers, students, researchers, newspaper reporters, existing and potential volunteers, persons curious about dementia and care, and so on. People contact me using email and the contact forms on my various websites, or even through social media sites. I try to respond as appropriately as I can, sharing my perspective and experiences. I find that interacting with persons other than caregivers can sometimes be an effective way to “multiply” my caregiver reach as these persons may end up doing something to benefit multiple caregivers.
  • I sometimes present my observations and concerns in some conferences. This happens once in a while. The presentations I make are available on my SlideShare account for easy reference for those who were not present in the conference. These, along with other material I have prepared, can be viewed at Presentations, infographics and documents on Slideshare)

The above involvement takes up a significant part of my available time and energy.

What I do not do:

  • I do not plan to get into providing services like trained attendants, respite care, etc. I do not plan to associate with/ act as consultant to anyone else setting up facilities.
  • I do not have any bricks-and-mortar support mechanism. I do not have an office where people can come to meet me. I do not have a space where I hold trainings or awareness classes. I do not plan to change this situation.
  • I do not partner or take up an official position for any existing or new venture.(read more if curious)
  • I do not sign petitions or lobby for anything. I do not understand the macro picture well enough to sign something saying the Govt. should spend X amount of money or attention for dementia (because attention spent in one thing is attention removed from another, and I am not an economist or policy maker). While I may emotionally feel strongly that more needs to be done about dementia, and I personally do whatever I think I can do, I do not consider my strong emotions as a valid reason to say the macro picture should change because I feel this.
  • I do not maintain a database of good old age homes or agencies for attendants, and I do not recommend names of any entities. However. my site does have quite extensive data on resources in various Indian cities and I try to keep this updated, but I do not claim this is either complete or fully validated.  What I  offer is information gathered with sincerity, but these are not recommendations.
  • I do not charge fees for anything I do, or for any document or online resources I create. (Hint: If you need a person with a “chaap” and an infrastructural backing, I’m not the right choice.)
  • I avoid personal publicity. I am only concerned about getting visibility for dementia and care aspects as relevant in India, and doing what I can to support the cause.

My underlying philosophy:

My focus is to make life more manageable for persons with dementia and for their family caregivers. I believe that those supporting them need to see the persons with dementia and their caregivers as multi-dimensional persons with various needs, roles, and responsibilities–and who, because of dementia, are facing extraordinary challenges and need information and support on multiple fronts. I am strongly against any attempt to lecture caregivers on culture or values, or criticize them in any way. My approach is quite different 🙂 I believe that by a better understanding of dementia and better exposure to shared experiences and various tools and tips, we  can individually and collectively improve the lives of persons with dementia and their family caregivers, and reduce the pain, hurt, and disorientation often involved in living with dementia.

I do not believe I know the best way (or even a better way) to give care. For many years now, I have been concerned with dementia care, and have played an active role, including conducting dementia awareness programs and training family caregivers and volunteers. Additionally, I’ve been a caregiver for well over a decade, and have interacted with several other caregivers and volunteers, exchanging stories and tips. However, every situation carries its own challenges; my experience and knowledge may or may not provide appropriate pointers. I am not an expert or a consultant or counselor. My attempt is to offer a consolidation of my knowledge, thoughts, and opinions to anyone who may benefit from them. I am constantly learning from the experiences and thoughts of others, and fine-tuning my understanding.

I am always acutely aware that the family members are in the best position to decide what to do . They are the ones facing the situation, and they understand it best. Every family, every challenge is unique and the approach to it needs to be tailored by those actually facing it and understanding it best. I value anything I hear from any caregiver.  I consider being a good listener as the most important part of interacting with caregivers.

2 Responses to The dementia care related work I do

  1. B says:

    Hello Swapna, I’m happy you are still working for the cause of dementia. I had contacted you back in 2011, about a year after my mother passed away. Your blog, if I remember correctly still looks the same but now has a lot more sections that require ample reading time. I will certainly go through the content whenever I have time. One of your older articles ‘A difficult story to write’ is still around and it still brings tears to my eyes. There may be other Sangeethas, men and women who would need some encouragement. Sangeetha did not find the light at the end of the tunnel, but it is certainly there. I know because I found it.

    If there is something I can do to assist you in this mission do let me know. I’m a freelance writer (which is a slightly better position than being unemployed).

    • Hi there, good to hear from you again. Yes, that Sangeetha story still makes my heart quiver, too… There is just so much to do it gets intimidating, but I think anything you can do to spread awareness and sensitivity in your immediate circles helps. If many of us would do something in our own circles, the cumulative effect would be there. If you are a freelance writer, then maybe choosing to occasionally write about such issues is one such way.

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