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 have been a dementia caregiver for over a decade and have, for the last few years, also functioned as 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. 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 90 pages), a Hindi website, Dementia Hindi (over 40 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 Indiaand 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 include creating new English or Hindi videos, new downloadable documents, augmenting my websites to discuss some special topic or create new pages, adding blog entries, and so on. 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.

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

What I do not do:

  • I do not maintain a database of good old age homes or agencies for attendants, and I do not recommend names of any entities (though I may direct information seekers to other volunteers who maintain such lists).
  • 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.*
  • 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).
  • 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 any 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. Support needs 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 all can 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.

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