I see myself as a resource person on dementia care who is available to other caregivers and to persons concerned about caregivers. I am not an “official” dementia care expert, or indeed, an expert of any sort, but I do the best I can to help whoever approaches me. My concern and commitment for this sphere of work comes from the challenges I have faced myself (for over a decade I was the primary caregiver for my mother, a dementia patient) and also multiple interactions with other caregivers who shared their experiences, their problems, and their triumphs with me. Below, I explain what I do to directly support family dementia caregivers in India (for what I do to support/ participate with volunteers helping caregivers, see: My involvement in dementia care support: an explanation).
I am always available to family caregivers to listen to them, to provide them information, and to share caregiving tips. I learn from all such interactions. If you are a dementia home caregiver in India looking for information or help, you can just contact me and I’ll do my best to help (though whether that will actually help I can’t say 
I try to support caregivers by the following activities:
I create information (documents) that could help caregivers or persons concerned about caregivers. I blog regularly on dementia care (my blog is here and has over 150 posts). I maintain and keep adding to a comprehensive website for dementia caregivers in India at Dementia Care Notes(a website with over 90 pages) and its Hindi version, Dementia Hindi, create videos and downloadable presentations and documents. Whenever I can, I add caregiver interviews to my site. I do this because I believe we need more material directly suitable for Indian caregivers, with settings and incidents caregivers can relate to. I constantly evaluate what to do next, and pick up what best fits my perception of what people need and (equally importantly) my energy and enjoyment levels.
Because I am visible online, many persons approach me. My priority when it comes to responding is helping family caregivers. I respond promptly to caregivers who need support or have questions or want to know whether they are alone in what they are feeling. I respond by email, and offer to discuss on phone if we can find a mutually convenient time. My usual response time is less than 24 hours. I am deeply concerned about dementia home care, and I belong to this caregiver community myself. I have sometimes spent hours talking to utter strangers, and made lasting friendships out of such queries.
I also get queries on, and respond to people who are concerned about whether someone they know has dementia. I recognize dementia awareness as a key area, and support this in my own way by responding to such queries providing information or pointers, as appropriate, I am not a doctor, and do not give any medical advice.
I interact with and support through online communities: I also participate in online caregiver communities, where I remain active and participate approximately once daily (but not all day long).
I conduct awareness programs and caregiver trainings when invited and if feasible. I sometimes get invitations to conduct dementia awareness programs, conduct caregiver trainings, or facilitate workshops or support groups, and these give me an opportunity to connect with more caregivers. I always welcome such opportunities and take them up, if feasible.
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 such 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 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 charge fees for anything I do, or for any document or artifact I create. I do not sell my dementia care work. (Hint: If you need a person with a “chaap” and an infrastructural backing, I’m not the right choice.)
P S: If you have sent me a message more than 3 days ago, and have not got my response, it means there was a glitch somewhere and you should write to me again.
My philosophy regarding caregiving
My focus is to make life more manageable for dementia caregivers in India, not just with respect to caregiving but also fully recognizing that caregivers are not one-dimensional creatures; they play multiple roles and responsibilities. I am not into “dementia care support” because I believe that patients deserve a good deal, or that this is culture or duty and I am a custodian of values who is setting Indian society right. Quite the contrary I work because I believe we can reduce the pain and hurt everyone goes through because of dementia and care–and that includes not just the patient but also the caregiver and the rest of the family.
I do not believe I know the best way (or even a better way) to give care. All I have is my experience and what I have heard from many caregivers and some volunteers, and I 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.
According to me, every patient, every family, every situation is unique and needs a tailored way forward, and the family is in the best position to decide what to do. I value anything I hear from any caregiver, and I consider being a good listener as the most important part of interacting with caregivers.
If you are a caregiver in India, and you think I may be able to help, or you just need someone to listen to you or share with you, please do not hesitate to contact me.
Notes:
The blog I refer to (with over 150 entries) is this one, that is: Swapna writes
The sites I refer to are Dementia Care Notes and Dementia Hindi
To know my availability for interactions with volunteers concerned about caregivers see: My involvement in dementia care support: an explanation. This page describes my involvement in interacting with/ supporting caregivers and also volunteers interested in dementia care in India.
