Adventures in Hindi Part 4: In the end is the beginning, or, more observations, a summing up and a way forward.

The temptation to seek elusive patterns by examining random snippets is rather high, but I have this self-imposed criterion that I cannot “play around” under the garb of “investigation” for more than a week–I must do something tangible before I get the next “quota” to play. It may sometimes be a blog post, sometimes page on my website, or a video. For someone who has been working from home as one’s own boss (and office boy) for years, such a rule is necessary for sanity…

So, having made three meandering posts, I am determined today to wrap up my ideas and learning in this fourth and last post of the series.

(For those who don’t like the upside down reading that serial blogs entail, the earlier parts are as follows: Adventures in Hindi Part 1: A mother-tongue fading behind a veil, Adventures in Hindi Part 2: The failed experiment of Have-English-can-translate-to-Hindi, Adventures in Hindi Part 3: India Shining, Internet, and the entertainment override)

I embarked on this adventure prompted by the lack of Hindi material on dementia. It is now my impression that other than the most desperate, no one expects helpful material to be available online, and no one other than the desperate look for it. And even the desperate may not check on the Internet because they don’t know Hindi material can be found there, or are clueless about how to find it.

And this impression could really let me off the hook– no one is expecting it or looking for it, hey, there’s no problem! No demand, so no need to supply, that’s cool

But here is another way to think of it: If there were material in a format attractive to Hindi speakers/ readers, and if such material was visible to an audience grappling with problems related to dementia care in their family, such material would help. The audience I refer to is persons who speak Hindi and consider it a language they know and are comfortable with, and who are not as comfortable with English. Such an audience will also be unfamiliar with concepts discussed in English but not usually discussed in Hindi.

Which means, the wriggle-out space to avoid work on Hindi reduces.

(And as before, what I write of Hindi would probably apply to Kannada or Gujarati or Tamil or any other Indian language)

There is some Hindi material related to dementia already present on the web. Many are news articles thanks, in part, to Suresh Kalmadi, single-page news items or some comments/ blogs on them (sarcastic ones). The news items that I’ve chanced upon do not explain dementia (other than calling it a memory problem), nor do they explain the relationship between dementia and Alzheimer’s. Some experts are quoted, often using out-of-context snippets and distorted statements. Dementia symptoms are not identified, and there’s contradictory stuff on whether dementia can be prevented or not, treated or not, cured or not.

Been working on dementia care site

I’ve not blogged for a while, mainly as I decided to put in a burst of work on my site, based on the surveys I did earlier. The March survey had shown trained attendants as a major concern area, and I tackled this first, gathering information from multiple sources. I was looking for areas of concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog entry).

One upshoot of all that energy is that the Dementia Care Notes website now includes a detailed page on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here: Using Trained Attendants for Dementia Home Care The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care.

I’ve also added other pages on some other important topics, like Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning and Long-Distance Caregiving for Dementia Patients in India

As I worked on these pages, I found myself coming up with a lot of ideas that merited blog entries. My experiences, my interactions with other caregivers, my realizations (during social gatherings and even medical trips) of how people outside my immediate circles seem as unaware of dementia now as they were three years ago. My comments on movies that depict dementia. Other stuff like that. I’ve jotted them down. I am hoping to make more frequent blog entries now, maybe even once a week, but I’m a bit wary of committing to that.

Time, now, for a break for a few days and then I hope to fall in a regular cycle of blogging…Let’s see…

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Where dementia caregivers in India need help

Because time and energy are limited, because there is so much that can be done, because I need to prioritize (or risk going crazy), I decided to use a simple, single question survey to gather data from dementia caregivers in India/ people involved with them. I put up the survey in the second week of February.

I am grateful to every caregiver/ friend of care giver who took time to share their thoughts or forward the link/ e-mail to someone else who may have been interested.

In this post I am analysing the first batch of responses received: the 17 responses I received up to March 14, 2011.

First, about the questionnaire (given below). My simple, single question survey collected no personal data, but also did not allow a person to respond twice. Respondents could choose as many options as they wanted. I expected them to tick any options they considered helpful, and if someone ticked all options, it would be because that person genuinely felt all the choices offered were helpful. (The survey is still open and can be taken here)

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I suspect more responses may be on the way. I will present the analysis of the remaining responses later, after the responses trickle down to zero again–or this post will never get done.  

For this first batch of 17 trickle-in-one-by-one responses, the counts fell in two clear categories.

Most respondents chose the following options:

• Availability of trained attendant (14)
• Training programs for caregiving skills (12)
• Home nursing services (12)

And fewer chose these other three options:

• Support group meetings (6)
• Caregiving books/ videos (6)
• Day care/ respite care (7)

In the “others”, I received the following three comments:

• And more information available in public which helps you understand that dementia is an illness not something that you need to hide away!
• Professionally Trained Nurses who do not take the other inmates of the house for a ride.
• knowledge of potential volunteers for caregiving

So, folks, that is the raw data: interpret it as you will. Below is my impression.

HBO’s Alzheimer’s Project

I’ve been busy, not enough time to write a detailed post on a few topics I want to, but then I saw this set of video streams, and it was worth writing about: HBO’s Alzheimer Project. Have a look here.

If you want to see what dementia means to the patient, and to  caregivers, this is an absolute must. The project includes a set of videos (which will be available for sale later), and guides that go along, and supplementary material. There is also a lot of data that makes the impact really sink in. Did you know, for example, that 54% of the people in America have been touched by Alzheimer’s, as patients, relatives, friends, whatever.  The national impact of Alzheimer’s (for USA) is discussed.

One of the dementia patients interviewed (Joe Potocny) has been using a blog to record his thoughts as he progresses through the disease. He also twitters.

It was while going through these video streams and other material that I realized how different it is in India, where diagnosis usually happens (if at all) in middle to late stages.

I, for one, have not met a patient diagnosed at a very early stage, who understands he/ she has dementia but is still almost fully alert/ functional, and is therefore planning for and dreading the future. I have not seen a family where the patient explains to his/ her grandchildren what will happen to him/ her because of the disease in a few years. I do not know patients who have grasped the impact of the disease in time to say their farewells the way they may want to.

If ever I get dementia, I would like to know in time to enter the state with grace and after having said my farewells and given my hugs to all I care for, after neatly setting aside my life as memory forces me to.  Even if the disease is non-treatable, surely there can be dignity in the way one embarks on this downward slide, dignity while it lasts.

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