Online resources for family caregivers of persons with dementia: participate in a NIMHANS study

For well over a decade now, I have been trying to persuade people to use the potential of the digital world to support dementia caregivers better.

I am therefore happy to share with you that researchers at the reputed NIMHANS (National Institute of Mental Health and Neurosciences, Bangalore) have, along with collaborators from Australia and the UK, developed some online resources in English, Hindi and Kannada to support persons with dementia and their carers. The study is called “Moving Pictures: Using digital media to improve dementia care in India”. They are looking for persons to participate in a study to test these resources.

According to them participation will just take 3-4 hours spread over 6 months, and there will also be reimbursement.

Participants need to be:

• 18 years or older
• a family carer of a person with dementia
• proficient in English, Hindi, or Kannada
• own a smartphone.

There are many ways you can contact them to find out more or enrol:

• Email movingpicturesind@gmail.com
• Contact 97399 15616
• Use the Google form by clicking
  • For English: https://forms.gle/5q9qijtrePbewcz48 (opens in a new tab). 
  • For Hindi: https://forms.gle/YC2CegwkH9qhAWDYA (opens in a new tab). 
  • For Kannada: https://forms.gle/1WVM8Q8vQXufwn5q7 (opens in a new tab). 
• Click on the poster image below for the language you want (opens in a new tab). (Images reproduced with permission from NIMHANS.)

If you are a family caregiver of someone with dementia, please consider using use this opportunity to enrol and see these online resources.

Or, share this post with someone who may be interested – share the blog entry link on social media, show it to friends, etc.

Additional data for those curious about the study and its design, protocol etc: The study, the ethical approval for this has been given by the NIMHANS Ethics Committee (No. NIMHANS/ 26th IEC (BEH.SC.DIV.)/2020-21) with reciprocal ethical approval by Curtin University Human Research Ethics (HRE2020-0735). The study is funded by the Alzheimer’s Association, USA. The CTRI entry is at this link (opens in new tab) (search for moving pictures if the link leads you to the home page and not to the study). The paper with the protocol is here (opens in new tab).

The changing dementia landscape in India: observations and thoughts

Around 15 years ago, I started sharing my dementia experiences and later began work on content creation and caregiver support. Much has changed in the dementia landscape in India in this period. I share some of my salient observations in this post. As my work has been content-creation and support, but does not include any services, my observations are likely to differ from what most persons and organizations working in dementia have. 

Major changes have happened in the exposure of people to terms like “dementia”, “Alzheimer’s” etc. Almost everyone has, by now, heard of dementia or seen it in someone they know directly or indirectly. As families typically handle dementia care without expert advice or support, the impressions that society carries are, on an average, based on difficult and unsupported care situations, and without exposure to structured/ effective care approaches.

The general sense in many families is a vague (but fear-inducing) familiarity with dementia based on mostly intimidating personal experiences of peers and friends. There is often a feeling that there are no better tips and techniques out there other than those shared by people we know. This is only natural; it is the approach we use for most things. In these past years, I have seen a distinct decline in people searching for answers or tips outside their own circles. This is very different from the blank slate most families felt they were facing fifteen years ago when they heard the word “dementia”.

Another major change is regarding diagnosis. Fifteen years ago, many families did not seek diagnosis because they did not think the symptoms were due to a medical condition. Now, increasingly, families self-assign a “diagnosis” of dementia without going to a doctor. A formal diagnosis by a doctor is considered unnecessary, costly, bothersome to everyone, and no value add. In fact, many families say that the doctors they know personally also advise them against getting a formal diagnosis because “nothing can be done anyway, you just have to live with it”. They also know many peers who similarly opted against getting a formal diagnosis. Often, they have not ruled out reversible causes for the symptoms. Whether the symptoms are caused by dementia or something else, many families, lacking a diagnosis, have no access to relevant healthcare support (such as it is). 

Overall, ignorance has been getting replaced by a sense of hopelessness around “dementia”. Seeking information outside close circles is low. This means reduced chance of empowerment through information and support. This trend will be very difficult to reverse without focused, well-designed, sufficiently intense campaigns created for this social reality – because every day around us more and more families get added to this pool of society’s perception of dementia.

There has been a huge uptick in the use of digital sources, especially YouTube, which is almost like a second search engine now. There is also a huge increase in use of digital in languages other than English. Mobiles are now the device of choice. This could be factored in content creation to spread awareness and effective coping more widely.

Alas, creation of structured, simple content in multiple languages, geared to and suitable for the multiple socio-economic and geographic profiles in India is not yet a focus for enough persons/entities working in the dementia domain.

By and large, work done is scattered. It typically continues to be English first/ English only, aimed at educated, upper middle class urban families – neglecting huge swathes of our population. Typically content assumes captive audiences that will reach it using keywords laypersons may never search on. It does not provide the simple explanations, hope and answers people want.  In any case, as mentioned above, not too many people think there could be any improvement on what they already know.

On the other hand, there are entities and persons who are in tune with what sort of answers people want, how to make effective short videos or create viral WhatsApp messages and they are using these to reach the underserved with their own interpretations and solutions. These often include misinformation or untested techniques and ineffective or even harmful solutions.  Lay persons may not always discern what is reliable from what is not. 

In brief, the information and empowerment gap that needs to be bridged is, in my option, widening alarmingly fast. The societal impression of dementia described above is growing fast, becoming stronger and spreading wider and will become increasingly difficult to undo.  I feel that any approach to bridge this gap cannot assume the same situation as was there over a decade ago, nor should it continue to ignore the bulk of India.

It is tough to reach people who don’t feel they need information. It requires understanding what people think and want, and tuning campaigns accordingly. A sociological understanding and use of ethical, appropriately designed social persuasion techniques is required. We have no time to lose.

Many people in the dementia domain focus on services and this will benefit families who are currently unable to find suitable help. But there is a large population of affected families that cannot or will not use services for various reasons. In any case, even at its most optimistic, services can only be accessible and affordable to a very small segment of the one crore or so of the families affected. We need to explore beyond providing services to find approaches that provide information and relief to the vast majority of families.  Note that even the few families who use services will typically only do so after years of trying to cope themselves at home, often without diagnosis, without information, without support, and without knowing that some perspective shift and some tips could make a major difference.

These are just some of my major observations, but I feel they are concerning and would love to hear your views.

Digital interventions that support dementia care are essential now

The abrupt closure of many in-person support interventions because of COVID-19 made it necessary to find alternate ways to reach audiences. Transitioning to digital was required – but organizations, caught unprepared, struggled as they rushed to offer what they could arrange in a hurry.

As such, digital interventions can be used to reach families outside metros, families that need information and support  – and can be used to provide support in several languages. They can complement in-person interventions, or even be the sole intervention if target beneficiaries can’t be reached through in-person interventions.  Unfortunately, in the past,  service providers were reluctant and unconvinced about the practicality and potential benefit of digital support. A few years ago, for example, when I suggested that online support group meetings can benefit caregivers who cannot attend in-person meetings, I was told that caregivers would not attend online.

As such, digital interventions can be used to reach families outside metros, families that need information and support  – and can be used to provide support in several languages. They can complement in-person interventions, or even be the sole intervention if target beneficiaries can’t be reached through in-person interventions.  Unfortunately, in the past,  service providers were reluctant and unconvinced about the practicality and potential benefit of digital support. A few years ago, for example, when I suggested that online support group meetings can benefit caregivers who cannot attend in-person meetings, I was told that caregivers would not attend online.

COVID-19 has shown us we are more ready for digital than everyone thought. Even with the abrupt thrust into lockdown, some providers were able to arrange some help – usually as webinars, live meetings, availability over phone, etc. Equally, people who needed support figured out how to participate in online webinars, how to locate help online, and use various “live” platforms (with support of friends and relatives).

The current situation mixes containment/ lockdown/ changes like work-from-home and need to protect seniors  while also starting “unlock” and attempts at “normalcy.” People are resuming work somewhat,  but with new social habits like masks and social distancing. Some in-person support will become possible again (with due standard operating procedures, of course). But much more caution is required, too. And use of digital platforms will stay.

The current initiatives do not exploit the full potential of digital platforms. Most offerings are short, standalone units, often without a clear agenda, and attended by people with widely varying background and needs. Much more can be done. We also need cohesive offerings for relevant caregiver education and support areas. For example – online caregiver training through well-designed multi-media content integrated with online opportunities to interact with experts for discussion and queries.

I suggest that it is time for organizations to design more effective digital interventions – whether awareness material, caregiver education, workshops, or support groups. Digital interventions can be used  to achieve a paradigm shift – they can inform and support hitherto unreached, under-served audiences from multiple socioeconomic and cultural backgrounds.

In this context  I’m sharing some work I did last year (before COVID) where I looked at the potential of digital interventions in India, usage patterns, expected growth, gaps in online support available and so on. Based on these, I included suggestions and priorities for digital interventions to improve dementia care support in India. I am  sharing it below  in the hope that it may be useful for pointers and generating  ideas.

Do have a look. You can read the article here: Digital interventions to support families living with dementia in India  or in the player below:

Keeping online care resources relevant in COVID times

These are challenging times as authorities across the world continuously adjust their advice and systems to minimize the impact of COVID-19 on multiple fronts while data on this new virus keeps coming in. Multiple aspects of family life are impacted, and in addition to adjustments required, there is fear, uncertainty, conflicting information, and a general sense of lack of support. Families already in vulnerable situations (such as old age, illnesses, socioeconomic situations, family dynamics and constraints etc) have been hit harder.

In this current scenario, online and phone support have become far more sought after and relevant. This post is about how non-COVID online care resources  are integrating material relevant to the COVID context, and also my own attempts to contribute to this area. It is not about information on COVID 19 or the restrictions as such, or even about the status of  spread- these are available in well-publicized, reliable sites of various ministries.

Additional support is needed by caregivers due to COVID

Families face difficulties providing care for regular medical problems – after all, other health challenges have not vanished just because COVID has become a prominent healthcare challenge. Actually COVID-19 has added to existing care challenges because families have to continue the regular care and also handle challenges like the risk of COVID infection and lockdown (including unlock) requirements. Unfortunately, available systems and support have reduced – like closing down of day care centers, reduced availability of trained attendants, reduced coverage of  home health services , additional precautions imposed at places providing services.

Availability of online information, support and services plays a very important role in times like this. Unfortunately, the situation has caught most support organizations unawares and while some have been able to transition part of their work online, others have not. Some have started a few online sessions for families, for persons with dementia, for support groups, etc. There are so many webinars (ranging from absolutely useless to quite useful) that it gets difficult to select one that is useful. Just because webinars are free doesn’t mean caregivers have the time to keep watching them all for a few pearls of wisdom.

Unfortunately, online resources may not have been updated for the COVID context

Alas, many organizations are not updating their online data to reflect their operational status. Friends report that the website and social media data on the phone numbers and timings of helplines are not reliable – the organizations may have changed their phone numbers and reduced timings due to COVID, but not corrected this in their online presence. This leads to people feeling even less supported when no one responds to their calls.

When lockdowns began, dementia day care centers across the world closed. In-person services were suspended. Some residential care homes also closed down, or reduced the number of residents they were serving, or stopped new admissions. They also imposed various precautionary measures about visitors to protect residents from infection and implemented their own procedures (SOPs). Many home health care services also changed the services they continued with.

As I maintain pages on city-wise resources in India,  I decided to check the status of various such resources by visiting their websites. But none of the websites I visited mentioned that day care and in-person services were suspended. The websites of full time care facilities did not mention COVID or steps taken by them for it. Some website had added a pop-up window mentioning COVID and related measures, but the pages  describing the services remained as they were before COVID.

It became clear that I could not assume websites of such entities are up-to-date. So, I updated my website resources pages to mention closure of day care centers and asked people to call up the centers to get updates about re-opening.  

For a family looking for information on services, this  lack of updates is very misleading. This is even more so in times when people expect better data online. Hopefully some of these entities have made their online data more up-to-date by now.

COVID-related information and suggestions are relevant for multiple aspects of care

There are many sites that give information on dementia and care, and most have a section now on COVID, which is useful. This is mostly as one or more additional new pages on COVID.

However, the detailed care pages on these sites are typically not updated for how care needs to change for the COVID situation.

The COVID situation is not something that will vanish in a week or month or so. The changes required will remain relevant for a long while, especially those related to vulnerable sections like persons with dementia. Take, for example, “communication.” Advice on how to communicate with a dementia person needs to factor in aspects like use of masks, and it is not enough to have that on a separate, general page on COVID. Edits for such changes are required on pages that discuss communication.

My attempts to keep my work relevant in the COVID context

My own response in terms of website updates for  COVID  required understanding the situation better, seeing how various organizations were handling it, and what the authorities advised. I first published Dementia Home Care, the COVID-19 infection risk, and Lockdown/ Unlock challenges  in April 2020. I have since revised this page multiple times to ensure it remains in sync with the situation and the latest advice and shared practices.  I also created a series of Hindi posts on “डिमेंशिया देखभाल और कोविड-19 (COVID-19)” for my Hindi site, with four parts: भाग 1: व्यक्ति को वायरस से बचाएं,   भाग 2:  देखभाल कैसे एडजस्ट करें, भाग 3:  दवा खरीदना, टेस्ट करवाना, टेलीमेडिसिन से सलाह लेना, अस्पताल जाना and भाग 4:   कारगर देखभाल और तनाव मुक्ति के लिए अन्य सुझाव, सहायता के लिए संसाधन, इत्यादि.

By May, I realized that it was not enough to have a separate set of pages on COVID, howsoever comprehensive and updated. The fundamentals of COVID are not going to change in a hurry. I needed to incorporate COVID aspects in the care-related pages to keep the material relevant.   I also got feedback from caregivers on the problems they faced due to reduced services, closed day care centers, and so on.

I therefore began updating my website to ensure that, wherever relevant, the pages acknowledged the complexities added by the COVID 19 situation, and included relevant data and suggestions. Thing is, just about every caregiving aspect is affected, whether ways to help the person, improve quality of life, handle remote care, handling caregiver stress, etc.

So, for example, the page on communication now also discusses how masks add to the challenge of communication and what can be done. The page on home adjustments factors in (1) the crowding and intrusions that work-from-home can cause and (2) the confinement because of the advice that seniors avoid going out. The page on changed behaviour highlights the additional risk of challenges because of the restlessness and frustration now present due to the constraints.

The entire sweep resulted in edits to around forty pages on the Dementia Care Notes site.

We need a wider perspective, as problems faced by families are not compartmentalized

To cope with extraordinary challenges, we need to get a broader view and accept that we cannot always do the best. Compromises and adjustments are essential because every family, every caregiver faces multiple challenges, not just supporting someone with dementia.

A lot of COVID related advice for dementia focuses on how to make the quality of life better for the person with dementia. So, typically, a lot will be said on the importance of keeping the person engaged. But how will an already overwhelmed caregiver facing additional challenges and reduced support take on such work? Most families do not operate from the point of privilege such advice assumes. Repeatedly, feedback from families shows how interwoven all challenges are.  Suggestions cannot assume dementia care is all that matters. To keep tips practical and usable, the aspect of balancing multiple fronts has to be integrated. This is something I try in the content I create- it’s not always possible, but I try.

Another area I’ve been thinking hard about is how support systems need to be multi-dimensional – even more so now with COVID.

In May, I got an opportunity to make an online presentation on Dementia Home Care During COVID 19 at APHRDI (May 27, 2020). As this was for a more general audience, I pondered over dementia as a priority in COVID times. After all, a family does not face problems due to dementia in a separate compartment compared to the problems they are facing due to fear/ anxiety around COVID, economic problems, overcrowding, family conflicts, etc. And health care workers also need to look at a family’s situation and challenges and possible solutions as a whole, not just dementia or some other specific medical condition. To support families coping with dementia, these health care workers need to understand dementia just as they need to understand general ageing challenges, mental health problems, domestic abuse, substance abuse, chronic conditions like diabetes, and also appreciate the socioeconomic situations of families. It is time to actively integrate dementia awareness and support mechanisms into existing healthcare frameworks rather than work in isolation. (View the presentation here)

Finally

To sum up, I am trying to ensure my work remains relevant in COVID times – by creating new material and also updating existing content to keep it relevant in COVID times. Alas, content creation and update is a slow process and I don’t have much time or energy left to publicize the work I do, so if you have a look at my work and feel it can help others, please share it so that it reaches those it may help –  Thank you!

On this blog, my current focus, and such things

It’s been a while since I blogged, so here’s an update on my intentions and directions, this blog, and such stuff. But first, please note that while my blogging is less frequent, I am still very active in the dementia domain and I respond promptly when contacted–so please don’t hesitate to get in touch with me. (read about what I do here)When I began this blog, I was my mother’s caregiver. At that time, I was overwhelmed with the care work and trying to get a sense of balance in my life. My initial entries were on my situation at that time, and my memories and understanding of my care journey till then. I shared these under the broad category Caring for mother (including Dementia Diagnosis, Living with dementia, Challenging Behavior, People around us, Adapting home and life, Late stage care). I also shared my Musings of a caregiver (including topics like Caregiver role, Caregiver isolation, Fulfilment in caregiving, Pondering about dementia, aging, and caregiving, etc). These personal entries, over 150 of them, span well over a decade long dementia care journey.As I became more informed, I began creating content that could help other caregivers (and later, volunteers). I blogged to share thoughts and observations about dementia care in India, provide links to my work, and so on.

When my mother died around four years ago, I lost the person closest to me. My main role—being a primary caregiver – had disappeared. Blogging about my loss and disorientation helped me through this transition.

Blogs evolve with the life of the blogger. The shifting profile of my blog entries reflect that. In the initial phase, I had many years of past events to explore and share. Once I caught up with sharing those memories, my later entries have mainly been around ongoing concerns, observations, and work.

My broad concerns regarding the dementia domain have remained much the same for last few years, and so has my personality. I am a self-doubting introvert trying to contribute. I remain an unhappy realist in how I view the state of dementia awareness and support in India. The paucity of information and services still deeply concerns me. However, I no longer create blog entries focused on these aspects, because that gets boringly repetitive.

My current focus is still content creation, keeping old content up-to-date, and interacting with persons who contact (more on my current work here). I’m also working more on my Hindi blog.

I now blog only for significant milestones and completed projects that warrant a blog-style entry. I use Facebook to share ongoing content creation and also to share thoughts, concerns, and queries where I need faster feedback. (You can connect personally with me on Facebook, or “like” my Dementia Care Notes Facebook page). I may resume frequent blogging here if some concept or topic that fires me up requires a longer format for expressing it. If you “follow” this blog, you will get notifications whenever I post.

Meanwhile, please look at the stuff I’ve already shared (check the menu or side bar of the blog). And get in touch with me if you want. Thanks!

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Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

This blog post is part 2 of a two-part series on newspaper coverage of dementia in India. (read part 1 here)

Background: I had undertaken an exploratory study of the dementia/ Alzheimer coverage in the top Hindi and English newspapers to see how existing coverage may contribute to awareness/ support. In part 1, I documented my selection of newspapers how I gathered articles, and some initial analysis based on quantities (read part 1 here). In this post, part 2, I share my content analysis and suggestions.

Topics of this blog post:

• Approach to assessing a published piece
• Perspective 1: Article types, their relative proportions, and the way they cover dementia
• Perspective 2: Content effectiveness for each aspect relevant for awareness/ information
• Suggestions to improve the situation
• In conclusion
• References

Approach to assessing a published piece

For my content analysis, the reader profiles and the possible desirable outcomes I considered were:

• The (uninterested) general public: Typically persons who know nothing or very little about dementia. They may have seen persons with dementia symptoms, but and are not looking actively looking for information, and may not find the information useful. Desirable outcomes for this profile are increased alertness towards symptoms, better diagnosis-seeking behavior, and more supportive attitudes towards families living with dementia.
• The solution-seekers: These are persons who are concerned about dementia, typically because they or someone close to them has dementia. They are likely to read anything connected with dementia and will probably notice the word even if it is buried deep in an article. Desirable outcomes for these persons are better ability to live with and support dementia, reduced stress, reduced sense of isolation, and more willingness to share their experiences.

For the analysis, I looked at the full set of articles using two different perspectives.

• The various types of articles, the proportion in which these types appeared, and their typical coverage of dementia.
• The aspects relevant for spreading dementia awareness and information in the public, and checking how effective the existing coverage was with respect to each such aspect.

[Top of page]

Perspective 1: Article types found, the relative proportions, and the way they cover dementia

Types of articles mentioning dementia :

	Hindi	English
Wellness/ study reports	142 (61%)	185 (44%)
Event related articles	32 (14%)	40 (10%)
News articles mentioning dementia	24 (10%)	150 (36%)
General articles	33 (14%)	34 (8%)
Others	3 (1%)	10 (2%)
Total	234 articles (3 newspapers, all years)(100%)	419 articles (3 newspapers, only 2015) (100%)

Articles related to wellness/ health/ miracle-advance in medicine/ research studies: This was the largest category of articles, both in Hindi and in English. The percentage of articles in this category was higher in Hindi than in English (61% compared to 44%) as shown in the table alongside. Most of these contained only the words dementia/ Alzheimer’s or a small phrase about them, mainly focusing on memory loss. Some had sensational, confusing, or misleading titles or content. A few contained a bit more detail, but often these were complicated and buried.

Announcements/ reports of events and inaugurations around Alzheimer’s, or some related field (e.g., geriatrics). These typically related to World Alzheimer’s Day functions, conferences, release of reports, and were mostly in the months of September/ October. These formed 10-14% of the articles in both Hindi and English (see table). Article scope was often a mix of things such as names of experts, event venue and topics talked about, dementia statistics, etc. Some also included layperson-friendly information on dementia symptoms, risks, and the diagnosis process.

Current news articles that contained some mention of dementia. These were an assortment of celebrity news, crime news where some party had (or claimed to have) dementia, drug company news, business news, reviews and award announcements for movies, books, etc. The Hindi newspapers had a far lower percentage of articles in this category (around 10%) compared to the English newspapers, where they were a significant 36% of the total. Most such articles only contained the words (dementia or Alzheimer) or the standard phrase on ‘memory loss’.

General articles that mentioned dementia. These included personal essays, or special health features. They formed around 8-14% of the total coverage (see table). Many of them gave at least some useful information on dementia or care, and some were very useful.

Other articles that mentioned “dementia” and “Alzheimer”. These included many where these words were used as part of normal language to connote forgetfulness/ unacceptable behavior, etc. Some of these mocked politicians or complained about systems or used the words to joke. They formed around 1-2% of the total coverage in both Hindi and English.

[Top of page]

Perspective 2: Content effectiveness for each aspect relevant for awareness/ information

To see the effectiveness of the articles with respect to creating dementia awareness and conveying information, I have looked at them using various aspects relevant for dementia and care:

• Establishing familiarity with dementia/ Alzheimer as a serious medical condition
• Information conveyed regarding salient characteristics of dementia
• Information conveyed on dementia basics
• Information conveyed on dementia prevention/ treatment
• Information conveyed on dementia prevalence
• Information conveyed on dementia caregiving
• Negative factors in information conveyed–stigma/ mocking
• Overall usefulness of articles

Establishing familiarity with dementia/ Alzheimer as a serious medical condition

Current newspaper coverage is encouraging in terms of basic exposure to the words, both in Hindi and English. “Dementia “and “Alzheimer” seem to have become part of lists used in wellness articles along with other serious conditions (diabetes, cancer, etc.). Studies on dementia are being reported, too (though far less in Hindi than in English).

Exposure/ familiarity are a good foundation for an awareness drive. However, they work only if the usage is positive and if these are supplemented with availability of enough reliable and usable information.

[Top of page] [Perspective 2 sub-topics]

Information conveyed regarding salient characteristics of dementia

Around 73% of the articles only contained the word dementia (or Alzheimer) or used the context or a shorthand phrase/ context to imply one aspect of dementia.In the Hindi pieces, the most emphasized aspect was forgetting. Other phrases indicated age-related illness and mental illness. Typical phrases were: भूलने की बीमारी, स्मृति लोप, याददाश्त की कमजोरी, स्मरणशक्ति की समस्या, बढ़ती उम्र की समस्या, दिमागी बीमारी, मानसिक बीमारी. A scant few articles mentioned brain and cognition, often using rather Sanskritized Hindi: संज्ञानात्मक (ज्ञान संबंधी) गिरावट, मानसिक क्षमता ह्रास, बोध क्षमता, संज्ञान से जुड़ा विकार, मस्तिष्क का क्षय.

Anecdotally: I asked some middle class persons what they understood by some phrases (संज्ञान , मानसिक क्षमता ह्रास, cognitive impairment, neurodegenerative disease). Many had no idea of the meaning. None of them could come up with examples of behavior changes they would be alert about. I queried about “memory loss”, and almost everyone told me they suffered from it. Misplaced keys, forgotten activities, and forgotten names of people and movies were quoted as proof.

English newspaper coverage also mainly mentioned memory loss, age-related, and mental-illness, but other phrases were fairly common, too, such as: cognitive decline, cognitive impairment, neurodegenerative disease, etc.

All in all, these one-phrase depictions don’t inform laypersons what to be alert about, or how dementia/ AD symptoms may be similar to or different from old age. Terms like memory loss and old age are too all-encompassing for practical use.

On a related note: In both English and Hindi, this over-identification with forgetfulness has some very unfortunate implications because of the tendency of people to use it to mock/stigmatize. More on this later.

[Top of page] [Perspective 2 sub-topics]

Information conveyed on dementia basics

Newspapers: a common morning sight at any shop

While many articles talked of the need to avoid getting dementia, or suggested superfoods or healthy living/ active ageing for this, they did not explain dementia symptoms, duration, progression, and challenge clearly enough or explain why it was considered serious.

• Of the articles studied, only around 6% explained some of the dementia symptoms in friendly, understandable ways that I considered helpful to laypersons.
• Many aspects of dementia were neglected in almost all articles, such as the duration, progressive nature, the changed and difficult behaviour, possibility of early onset, possibility of initial symptoms other than memory loss, increased dependence and reduced mobility in later stages, etc.

As pointed out earlier, the “memory loss” aspect was repeatedly emphasized. This, along with missing or minimal mention of other symptoms, resulted in very unrealistic depictions.

For example, some articles said things like “a person may even forget the names of family members” as if that was the worst that could happen, and ignored problems of later stages, like persons not being able to do even simple tasks, incontinence, inability to swallow, becoming bedridden, etc

Seriousness of dementia was conveyed using terms like “debilitating” condition, “battle”, “throes of dementia”, “afflicted” and “suffer”, but these terms, in the absence of explanations and examples, do not increase the readers’ understanding or appreciation of the difficulties of dementia.

[Top of page] [Perspective 2 sub-topics]

Information conveyed on dementia prevention/ treatment

While articles with wellness advice and general interviews with doctors included some useful tips for reducing risk, and also discussed treatment, they were also sometimes misleading in big ways and small.

• Wellness type articles were sometimes somber and useful; others carried exaggerated claims, usually about a superfood/ super-remedy. As articles on superfoods keep getting published, this may not be a problem, as people are used to reading such claims in articles with titles like “20 uses of .”
• Misleading presentations of study reports are more problematic. Articles often presented the result of a single study as if talking about a well-tested cure or an established medical fact.
  • Sensational headings were common and tended to be simplistic and misleading. Even if the article text was balanced, the title’s dramatic impression could linger.
  • In Hindi newspapers, many of the translated research-related articles were heavily abbreviated; they did not include the disclaimers and nuances present in the English equivalents, and hence can confuse/ mislead.
  • Some study reports were useful; they reminded us to adopt healthier lifestyles.
• Interviews of experts (doctors, nutritionists, others) for health/ active ageing, or specific interviews for dementia.
  • Some such articles combined medical information from a doctor with non-medical advice (such as claims regarding superfoods/ herbs); combining the two in one article may be seen as approval by the expert quoted elsewhere in the article.
  • Some experts were quoted as saying that following their advice will “prevent” dementia. To most laypersons, “prevention” means never getting the disease.
  • Sometimes articles claimed (and even quote experts) that treatment will stop the disease or cure it. This could make people think dementia can be reversed.

In summary, some articles contained useful information on risk, treatment, diagnosis, but many of them also included misleading information. In articles quoting experts/ doctors, such misleading/ wrongly quoted tidbits are more believable, and hence more harmful.

Unfortunately, there were almost no articles that explicitly busted myths or squashed misleading claims or clearly and firmly corrected the misquoted expert-speak.

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Information conveyed on dementia prevalence

People take a condition more seriously if they know others with it, and can see how tough it is to cope with.One way this sense of closeness/ immediacy is reinforced is through news items that mention that someone has dementia (a celebrity or someone else). News about creative works (movies, books, plays, etc.) that include a character with dementia also help. Even a single-word mention ( had dementia) makes dementia more “real.”

• Articles in this category: Just 22 (around 9%) in Hindi fell in this category; there were many more (137 articles, around 33%) in English. This could be because the persons reported about in Hindi newspapers are not of the profile that admits to having dementia, or the creative works of interest to Hindi readers do not depict someone with dementia.

The possibility and challenges of dementia also hit harder through articles where families/ acquaintances describe their personal dementia-related experiences.

• Articles in this category: I found fewer than 5 Hindi articles that presented real-life care situations (this is too low to even consider what the proportion is). The number was better in English– 30 articles, (around 7%). Such articles often involve locating and interviewing families, which means more effort. Hindi lags behind English in this.
• Many personal stories were featured in city supplements of newspapers, not in the main newspaper, and were available only in some cities, limiting their visibility.

Prevalence is sometimes conveyed using statistics. Such mentions were often associated with event reports, and more visible in English newspapers. However, most readers don’t remember population and ageing numbers. They do not mentally convert national prevalence figures into an understanding of how prevalent dementia was in terms of people around them. These are just large numbers, and they don’t even remember the units of the numbers after some time (was it a lakh? a million? a crore?). I, therefore, do not consider such coverage effective in conveying (at an emotional level) that real people–we and those around us–can also get dementia and face major challenges.

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Information conveyed on dementia caregiving

Mention of caregiving in dementia articles, if present, was usually perfunctory and confined to platitude-filled sentences. (“They need love and care.”). Some articles included general advice on care or some tips/ comments by experts. Another source of care information was articles where people share personal stories or when a news item describes challenges that families faced because of coping with dementia.

• Articles in this category: Around 14 (around 6%) in Hindi, and somewhat better in number/ proportion at 56 articles (around 13%) in English.
• Even articles that carried some care-related information/ experiences did not provide a comprehensive view of care. They usually ignored aspects like the extent and type of care, and how to prepare for it. They did not mention counselling, training on care skills, resources, etc. Even collectively, they did not have enough detail for caregivers to appreciate the range of care-related work that needs to be planned for and done, and how to proceed.

The much lower coverage of the care aspect means readers don’t think about how dementia may impact the family. Seen along with other coverage gaps, newspaper coverage ends up depicting dementia as some sort of memory loss problem that can be stopped or removed using medicines and love.

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Negative factors in information conveyed–stigma/ mocking

Unfortunately, the close association established between dementia/ Alzheimer with forgetting/ confusion and with mental illness has resulted in the words being used in normal language while depicting confusion and forgetfulness.Here, for example, are some phrases from essays on utterly unrelated topics: “When the establishment is going senile, it feels everyone else has Alzheimer’s.” or “If you have been lucky to encounter such an odd creature, what do you think is wrong with him? Senile dementia?”

Worse, dementia and Alzheimer are used to mock people, especially politicians. In one instance, some workers of one party sent Alzheimer pills to a senior leader of another party as a “unique” protest. Jokes and accusations are increasingly made about politicians having Alzheimer’s. Such pieces seem more interesting than staid interviews and fact-filled articles, and get shared and liked on social media. This usage is damaging and difficult to stop.

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Overall usefulness of articles

Many articles containing the word dementia/ Alzheimer had only the words or a phrase or so. Some had a bit more, but often not in a usable, friendly way. I consider an article useful if it gives usable information on dementia and care to laypersons without stigma, and contains a good amount of information or at least conveys one important aspect very well, and where the misleading tidbits are relatively low. My subjective assessment, summarized:

• Both in Hindi and English, only around 9% of the articles were reasonably useful for laypersons to learn about dementia and care. However, the quality of usefulness was somewhat higher in the English articles.
• Many articles, including useful ones, contained a least some misleading/ confusing information. I tried to locate articles where the confusing/ misleading element seemed serious enough to (in my opinion) increase the chance of harmful beliefs or decisions. I categorized 15 Hindi articles (around 6%) and 12 English articles (around 3%) as harmfully misleading. Also, some articles directly stigmatized dementia. I found 4 Hindi articles and 10 English articles in this category.
• Note, too, that the quantity of articles in Hindi is much lower. Considering the overall picture, we have roughly 2-3 reasonably useful articles per year per newspaper in Hindi, and around 12-14 reasonably useful articles per year per newspaper in English. None of these useful articles provided comprehensive coverage. Put together, too, the total coverage misses many important aspects of dementia and care.
• On the whole, the quality and scope of coverage of the useful English articles was better than that of the useful Hindi articles, and the misleading tidbits based on studies were fewer in English. English articles also did a better coverage of the care aspect and had more coverage that could make dementia seem more real to readers. But stigmatizing usage of the word was high.

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The daily newspaper, part of the morning ‘chai’ routine

Suggestions to improve the situation

Stop the chances of a negative information loop . Counter misleading information, debunk myths, and condemn use of dementia/ Alzheimer to mock others. Talk and write about this, and build up public opinion against such stigmatizing. Stop the tendency to mock/ stigmatize before it reaches the levels it has reached in other countries because once it sets in, it is extremely difficult to correct.Improve the overall quality and quantity of coverage in all newspapers. Some things to consider:

• Use every event and occasion to disseminate usable information about dementia and care in simple, understandable language.
• When talking of dementia, take care to also convey the serious aspects of dementia and care, not just “memory loss” or initial symptoms. Talk about challenging behaviors, late stage dependency, the duration of dementia, progression, etc. Use examples and simple language.
• Take active steps to avoid being misquoted or quoted out of context. Often reporters, because they do not understand dementia well enough, miss nuances and hence inadvertently mislead readers because of the way they frame a sentence or select sentences from a larger interview. Make the reporters’ job easier and less prone to error.
  • Provide reporters material they can directly use in sidebars and as explanations.
  • Provide reporters press-releases of events
  • For expert interviews, opt for e-interviews and ask that you be quoted verbatim, and that if any paraphrasing is done, it should be validated with you. In some cases, reporters may even agree to show you the section of the article draft pertaining to your interview, especially if the interview is a long, informal phone chat and the article is not being rushed because of a deadline.
• Improve visibility for family experiences of living with dementia/ supporting dementia. Talk about the critical role of care, the planning and work it requires, and the support available. Help reporters locate and contact potential caregiver interviewees.
• Some reporters/ writers have a family member with dementia. Encourage them to write general articles and help them do a good job.
• In general, try to get useful coverage throughout the year, including coverage in the main sections of the paper and not just city supplements.

Additionally, find ways to get useful visibility for dementia in non-English newspapers. This is where bulk of the readership is. Understand how such newspapers select topics and articles, and use this to get more visibility and to spread awareness and information effectively. Some things to consider:

• Develop terminology in Indian languages that is easy to understand, non-stigmatizing, and yet does not water down the seriousness of the problems faced in dementia. That way, reporters will have a set of words/ phrases to use and will not end up using stigmatizing words or words that trivialize the problems.
• Try to get coverage in Indian language newspapers. Invite their reporters for events. Provide them press releases to use even if they cannot attend. Actively seek reporters/ writers of Indian language papers to write general articles included. Help them using various ways (as discussed earlier) so that they can write more effective and useful articles.
• Appreciate the problems of translating and abbreviating study reports/ research-related and find ways to dispense more balanced information on such studies. Directly counter/ debunk wrong information when talking to reporters or addressing gatherings.

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In conclusion

This two-part blog entry provides the highlights of what I learned from my study; I have not commented on many other interesting aspects like article attractiveness, readability, and retention of content. I consider the data presented above sufficient as a starting point to act. Of course, all my work was based on articles available free online and anyone interested can gather and study such articles, and draw their own conclusions and suggestions.[Top of page]

References

• Related blog posts: Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 1) and Dementia Awareness in India: What level is it at?
• Readership and Circulation data links: Wikipedia page on newspaper circulation in India, , Wikipedia page on newspaper readership in India, and some topline findings.
• Wikipedia pages of the newspapers selected: Dainik Bhaskar, Dainik Jagran, Hindustan, The Times of India, The Hindu, Hindustan Times

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Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 1)

Everyone agrees that public awareness of dementia needs to be better, but is it improving? How good are the available ways of spreading information? After failing to locate studies on dementia awareness levels and trends, I decided to do a desk-based study to get some insight. This was my way to start understanding awareness levels and trends in India (some thoughts on this were shared in an earlier blog post.)

For this study, I tried to understand how newspapers in India mention and explain dementia and related care and how effective their coverage was for spreading awareness and useful information to laypersons.

Through my study, I looked at quantity, quality, and scope of coverage of the published articles. I then placed them in the context of awareness and support to laypersons.

The study approach, observations,and suggestions are detailed in this post and the next, along with specific data, but for a quick reference, here is a peek:

Key observations:

• I found a vast difference between the coverage of dementia in Hindi newspapers and English newspapers. Coverage in Hindi was much, much lower. It was also different in the mix of article types. Given that Hindi newspapers lead in both readership and circulation in India, understanding more about this aspect can be very useful.
• The scope of coverage of dementia and care omits many important aspects related to dementia: As such articles that mention dementia (or Alzheimer’s Disease) increase familiarity with the term ‘dementia’ and imply a serious medical condition. But in the articles studied, most stayed at this level–they just mentioned the words or added an accompanying shorthand phrase (typically “memory loss” or “भूलने की बीमारी”). That is, most articles did not provide any friendly description of the symptoms or other aspects of dementia or related care. Even the very few information-carrying articles available ignored or barely mentioned important aspects such as the range of changed and difficult behaviors, progression and duration of dementia, the critical role of care, and what caregivers need to learn and plan for.
• Misinformation, myths, exaggerated claims, and misleading headlines were common. They could be seen in all types of articles, even informative ones. Such misinformation can mislead, or even harm, negating a lot of the benefits found in some of the more useful articles. Some stigmatizing depictions were also present, often in catchy and witty ways that can “stick”.

The findings can help identify many actions that can improve coverage in newspapers. For example, interviewees and speakers can counter stigma and debunk myths. They can be especially alert while communicating concepts that reporters tend to misunderstand/ misquote/ misrepresent. Reporters can be given supplemental written material to help them write more useful articles. Areas that are typically not covered in articles can be specifically included while interacting with reporters.

(Read the full blog entry for detailed observations and suggestions)

In this Part 1 of the two-part blog post, topics covered are:

• Why study newspaper coverage
• Highlights of the Approach Used
• Selection of Newspapers Studied
• Gathering Data on Published Pieces
• Search Results Obtained (indicates quantity)
• Summary of the Quantitative Analysis

The second part provides the content analysis (of 650+ Hindi and English articles), observations, conclusions, and suggestions. Sections in this are: (1) Approach to assessing a published piece, (2) Perspective 1: Article types, their relative proportions, and the way they cover dementia, (3) Perspective 2: Content effectiveness for each aspect relevant for awareness/ information, (4) Suggestions to improve the situation, (5) In conclusion, and (6) References. Read it here: Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

Why study newspaper coverage

Common morning-walk sight: security guard reading a newspaper

The Neilson readership survey, 2014, shows that daily newspapers are a big part of media consumption. Reading newspapers is part of the morning ritual for many literate people across social and economic classes. Many readers any assume anything printed in a newspaper is correct. This makes newspapers a powerful medium for reaching out.

Editors commission and approve articles based on the availability of information and events to publish (supply) and what they think readers want or like (demand).

Useful articles result in desirable outcomes and form a reinforcing positive loop. Desirable outcomes include better diagnosis-seeking, better coping/ supporting/ living with dementia, openly sharing experiences, and removal of negativity and stigma. This means increased dementia-related demand, and perhaps some corresponding increase in the availability of services and events. All this in turn increases demand for informative articles and event reports, hence the chance of more pieces being published.

Misleading or stigmatizing articles form a reinforcing negative loop. Some articles are unproductive and harmful. They mislead readers by giving wrong or confusing information, or by stigmatizing the condition. This creates undesirable outcomes. Families may hide dementia and related challenges, or face criticism from others. Jokes and mockery pushes families into silence. Newspapers may pander to this aspect and increase sensational or stigmatizing portrayals, or may assume there is no demand and reduce all coverage.

My study looks at newspaper coverage in quantitative and qualitative terms to get some idea of the current status, and to explore how coverage can be changed to create a stronger positive loop.

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Highlights of the Approach Used

The objective was to understand what newspaper readers learn about dementia on reading the top newspapers of India. I looked for impact on two categories of laypersons: (1) general public, not particularly interested in dementia and (2) readers who want information/ solutions related to dementia (like caregivers). The steps followed were:

• selecting the newspapers to study
• collecting published articles that met my criteria
• looking at the quantity of articles, trends, and also analyzing the content
• using the observations to derive suggestions for making newspaper coverage more effective for dementia awareness/ support.

This was a single-person desk-based study, not validated by anyone. My observations on content are influenced by my perspective. I have shared my salient observations for others to consider, and explore further, or do independent studies, etc.

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Selection of Newspapers Studied

I considered the readership and circulation data available on the Wikipedia pages. Hindi newspapers top both the circulation and the readership lists, as do newspapers in other Indian languages. English papers occupy only 3 of the top 20 positions in circulation, and 2 of the top 18 in readership. I decided to study the top three English newspapers and the top three Hindi newspapers:

• English Newspapers Studied: Times of India (TOI), The Hindustan Times (HT), and The Hindu (TH)
• Hindi Newspapers Studied: Dainik Bhaskar (DB), Dainik Jaagran(DJ), and Hindustan (LH)

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Gathering Data on Published Pieces

To understand the way newspaper readers may encounter information on dementia and related care, I looked for published pieces available online that mentioned “dementia” OR “Alzheimer” using English and Hindi spellings. I did not attempt manually reading printed copies of newspapers. The steps were:

• Obtaining links from the newspaper’s search feature using various search combinations.
• Supplementing this set with Google advanced search where I looked for the words within the newspaper site.
  • For Hindi papers, I processed all results for all years for which data was available
  • For English, the results were too many and full of duds, so I confined myself to the past one year (2015). I checked each search result page from Google till I had processed all search result pages or reached a point where two consecutive search result pages yielded no new link.
• Combining results and removing duplicates (identical title and content)

Limitations: (1) This approach cannot collect print articles that have not been made available online. (2) It depends on various search engines to locate relevant pieces.

Observations during the search:

Different newspapers used different approaches for their online presence. They differed in terms of what they make available online, how much old data was available, and their search interface and options. Searching the Hindi newspaper sites was especially tricky and did not work well for some newspapers, but fortunately, Google advanced search worked very well.

I obtained different but overlapping results from the two search methods I used (newspaper site search feature and Google advanced search).

Fortunately, by combining the multiple searches, I was able to get a good base of articles within and across newspapers. These results represent the type pf articles in the newspapers and also give an approximation of the proportion between various article types.

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Search Results Obtained (indicates quantity)

(all data was gathered during the project execution dates: January 11-31, 2016)

I got 234 articles from Hindi newspapers. These were the articles I retrieved from all the three top Hindi newspapers, spanning whatever was available online across the years. (Note: different newspapers had started their online archival in different years).

• The newspaper-wise count: [DB]: 77 articles from 2012 to 2015, [DJ]: 73 articles, from 2011 to 2015, and [LH]: 84 articles from 2009 to 2015
• Since all newspapers had archival in place for more than three years, I combined the results to see data for last three years (2013, 2014, 2015). The distribution was: 48(2013), 46(2014), and 78 (2015).

Search results were much higher for English newspapers, so I confined my English-article study to articles published in 2015. I got 419 articles from English newspapers for all the three selected newspapers, pertaining to one year (2015).

• The newspaper-wise numbers of retrieved articles was: [TOI]: 134 articles, [TH]: 195, [HT]: 90, all pertaining to 2015.
• To get an idea of trends, I tried searching for data corresponding to 2010 also, but was only able to obtain it for one newspaper, TH: I obtained 195 results (for year 2010).

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Summary of the Quantitative Analysis

Here are the preliminary observations, based purely on the quantity of coverage:

• Hindi coverage (in quantity) is well behind that of the English coverage. The article count I got for 2015 was 78 for the top three Hindi newspapers, and 419 for the top three English newspapers. Even taking into account the fact that the searches may not have helped me retrieve all the articles, this difference is significant.
• The data does not confirm that coverage is increasing over the years for either Hindi or for English newspapers.
  • The Hindi newspaper article counts for the last three years are too low to state that the 2015 figure indicates an upward trend in Hindi newspapers and is not just a fluctuation or a result of a changed archival method.
  • The only English newspaper data available (TH) showed no change from 2010 to 2015.

Note, however, that what really matters is good quality coverage and lack of stigmatizing coverage. All 650+ articles were analyzed to understand this, and I share my observations and suggestions in the next post. (the link will be included once the post is available)

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Thanks for reading!

Part two of this blog post is now available. Read it here Newspaper Coverage of Dementia in India: An Exploratory Analysis (Part 2)

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Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

As an ex-caregiver who tries to help other caregivers, I continue to be dismayed by how unprepared and unsupported families are through years of exhausting and heart-breaking dementia caregiving. Many families never get a diagnosis. Even those who get a diagnosis rarely get a realistic picture of how much they need to plan, what changes they will have to make in their lives, and how absent systemic support systems are.

Again and again, I find families clueless about the deterioration dementia brings. They do not know that dementia will keep worsening and that the person will become almost fully dependent. They have not registered that they will be using more and more of their time and money and energy for care. They often think dementia as memory problems; they do not know the person’s abilities will keep reducing. This will go on for years, and during this they will see the person deteriorate in heart-breaking ways. They start this journey unprepared, with no one holding their hands.

Almost all dementia care in India happens at home. Advice given to caregivers assumes many things about what families can afford and the time they have for caregiving. Families do not get a realistic picture for effective planning. They remain unaware of many potential problems. Possibly the advisers themselves do not understand the overwhelming and prolonged nature of care. And advisers do not appreciate that 24×7 home care differs from a day job of a trained professional who is part of a multi-disciplinary team. So a lot of their well-meaning advice is impractical because, though good in itself, the advice does not fit the family’s care context.

The fact is, dementia awareness and support in India is so poor that family caregivers have to create their own group of supporters. They have to plan for dementia caregiving and also for self-care. They have to plan finances for a marathon stretch of increased costs and reduced incomes. They have to see how to take out the required time and energy for years of care. They have to prepare for the emotional journey of caring and their stress and fatigue. They have to appreciate the limitations of the systems and support around them, and have realistic expectations. And all such planning has to be done early, because they will not be able to do much planning once they are submerged in intense caregiving.

Home care for someone with dementia is not a simple short-duration activity. Care happens for several years, and in the context of the culture and society and the family’s other obligations and desires. Many long-term decisions are made. We need to view dementia home care as part of this framework in order to understand and plan it better. We have to appreciate the limitations and then seek practical answers.

I have been mulling over this for a while now, and recently I put together my thoughts on such a framework along with some suggestions for caregivers and volunteers. Alas, there are far too many problems, and very few solutions or suggestions. I am not sure how much my presentation will help viewers, but it will surely give them something to think about. Maybe it will prompt families to derive practical approaches for their care situations. Maybe volunteers will find better ways to support families. You can view the presentation below, or view the presentation directly at Slideshare if the player below does not load properly.

Also, some similar posts and pages, and some resources:

• Helping professionals appreciate the realities of dementia home care
• Dementia caregivers: some thoughts
• From the comprehensive website for dementia caregivers in India: Caring for dementia patients and Dementia Home Care: An Overview.

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Dementia Awareness in India: What level is it at?

Many people working for dementia are sure that awareness is much better now — but they only have anecdotal data and personal impressions to support it. My own impression about dementia awareness in India is less optimistic. I think awareness has improved in pockets, and stayed the same or got worse in others. I also think that a lot of misinformation is spreading along with information, and that the negative impact of misinformation could partially offset the positive impact of good information.

This post presents my initial thoughts on how we can understand where our society stands in terms of awareness of dementia.

For a while now I’ve been asking around for are surveys or studies to gauge awareness levels in India. I have not found any recent studies that measure awareness. I have also been told that surveys cost money and resources. (One study I found was way back in 2009, the link of which is at the end of this post).

India is a country of diversities. There are rural areas that are difficult to access, there are urban slums, and there are luxurious apartment complexes in metros. There are the highly educated, the functionally literate, and the illiterates. India has many languages, and though many Indians know more than one language, many are not literate or fluent in more than one. There are abjectly poor persons living with extremely poor infrastructure, and there are advantaged persons who don’t even know that many families struggle for basic sanitation and clean drinking water.

How can any study, any research, get at least enough data from all these segments to obtain a sense of what is going on? Here are some initial thoughts I have.

Firstly, awareness is not important in itself. It is not an isolated goal. Awareness is important because it affects coping and behavior when a problem is faced. When there is zero awareness, persons facing the problem do nothing about it. When a society is fully aware about a problem, the solutions are so clear and available that we don’t have to bother about awareness at all–awareness is all-pervading.

Our concerns and actions to improve awareness and outcomes are because we are in between these two extremes.

Everyone working in the dementia domain agrees that awareness is very important. But people differ in how they perceive the current status, the direct efforts being made to improve awareness, and how effective they feel they are in helping families cope with dementia.

We need a realistic idea of the current levels and the progress in the level of awareness, because:

• Awareness data helps volunteers know the effect of their work. It helps them to channel their efforts better to achieve what they want.
• Awareness data provides a better basis for attracting volunteers and funds.
• Awareness data can be combined with data on diagnosis and family experiences to get better insights on how to get more early diagnosis, and to make life better for families living with dementia

Surveys on awareness require a lot of resources and are time-consuming and therefore cannot be conducted very frequently. However, in between exhaustive surveys, other indicators may be used to assess the trends in awareness levels more regularly. Broadly, I propose that analysts consider the following:

• Information-seeking behavior of families facing problems. As awareness increases, information-seeking from reliable sources should increase. Trends in information-seeking behavior are one indication of trends in awareness.
• Available information, its quantity, quality, and reach in relation to various segments of society. Awareness in any society cannot exist without information being available. Hence, the trends in information availability can point to the trends in awareness.

Below I explore these in some more detail.

Information-Seeking Behavior

When someone shows dementia symptoms, the person and the family may respond in different ways.

• The symptoms are ignored (old age), or feared to be stigmatizing and hidden
• The symptoms are not seen as “dementia” and information is sought from sources that are unreliable
• Information is sought from sources where these is chance of getting reliable help, like doctors, helplines, organizations related to dementia, searching books and the Internet, memory clinics, etc.

Data on some information-seeking behavior is free and publicly available (such as google trends, Wikipedia page reads) or is available as statistics issued by some organizations (like helpline usage, memory clinic visit records, website usage statistics of larger websites). This data can be studied for trends and also correlated to demographic factors.

For example, an analyst can see if a website’s visitors come more from one geographic region or another, or how they grow. Or they can see if the Google searches for a certain phrase have been going up over time. Or if a helpline is getting more calls now than earlier.

Availability of Information

Awareness cannot increase without correct information being available in multiple forms. If awareness has to be increased in a segment of society, persons in that segment need to have access to correct information in formats that they can understand and use. Even if information is available, persons may not think of hearing/ watching/ reading it, and information may have to be “pushed” on them in order to make them realize it is useful.

There are many possible forms of information. For example, printed information–articles in newspapers and magazines, books and comics, pamphlets, flyers. Information broadcasted over radio and TV ads and programs. Entertainment, such as movies, street plays. Programs conducted for information, like awareness talks at community centres, walks, etc. And online sources like websites, apps, forums.

There are also many other resources that can be approached, like doctors, helplines, memory clinics.

We can view pieces of information using various criteria, such as:

• Is the information in a format that the target audience can understand? What does it assume in terms of literacy, language and comprehension skills, accessibility, etc.?
• Is the information reliable and useful?
• Is it just a teaser, or is it practical and usable? Is it clear or can it be misleading?
• Is the information presented in a way that the target audience will be exposed to it naturally (like radio or TV ads and programs, movies, street plays)? Or is it only visible to those actively seeking it (like buying books or approaching a doctor)? How much effort does someone need to put in to get the information?
• How visible and persistent is the information?
• Is the information free or does it cost something (like a paid workshop)? Is it affordable, and cost-effective?
• Does the information reinforce stigmatizing depictions of dementia? Does it contain confusing or wrong information on symptoms, progression, treatment, etc.? (If so, the effect is negative)

Such criteria can help us gauge the usefulness (or harm) of pieces of information in terms of impact on awareness.

Take, for example, a printed English newspaper article. A printed article may be visible for only one day (when the paper is new), is of use only if seen by an English-reader who spots it, reads it, and understands it. The percolation of information through such an information piece is different from that of a TV ad played between a popular program or a radio ad aired between news programs or songs. Or consider a memory clinic; though this is a good source of authentic information it is used only by persons who know they should go there and who have the time and resources to visit it.

We can combine the estimated usefulness of pieces of information (a quality measure) with the quantity of information available (and how it is growing). This will give us a sense of how these facilitate improved awareness.

Fortunately, a lot of data is available free online, such as detailed demographic data, available articles, readership and viewership trends, income and spending patterns, projections for these, and so on. Some armchair analysis using public data, models, and maybe small surveys, can therefore provide insight about dementia awareness level and trends. This could supplement larger studies, but even otherwise, it would help us understand ground realities and gaps better. Volunteers can then decide where to focus efforts.

I may explore this in future posts. Meanwhile, I would love to hear your thoughts on this post. Please do share with others who may be interested.

Referred to above: The only paper I have found so far, a much-quoted paper by Dr. Amit Dias et al on treatment gap, based on surveys in Goa and published in 2009: Closing the treatment gap for dementia in India

I have several blog entries where I discuss awareness, but here are some links to posts that could be particularly relevantif you found the above discussion interesting:

• Need for well-designed dementia awareness campaigns A detailed post on why I consider awareness to be the best direction to improve the dementia situation, why I am not satisfied with existing approaches, and some specific ideas on actions that can help improve awareness.
• For those concerned about dementia and caregiving in India My thoughts about current awareness and my concern about the lack of work being done, comments on priorities and directions, and suggestions on how we can all try to do our bit
• Creating Dementia Friendly Communities: some thoughts (This post was created in 2013. I probably need to do another post to include some more recent work done in India on dementia friendly communities, and my thoughts on that. Maybe after some months?)

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Information and stories on dementia and care: Books from India

I’ve often lamented that we do not have enough discussion around dementia suitable in an Indian context. I’ve said that this it makes it difficult for families living with dementia to feel their experiences are part of the normal discourse of life. (Okay, so maybe I didn’t use those exact words, but sort of…)

Anyway, things are changing (albeit slowly). So around a couple of months ago I began collecting books written in an Indian context, published in India, and which are about dementia or at least prominently include it. I had some of these books already; I bought the rest.

Here’s the set I gathered and have commented on below.

For this post, I am considering these books only in terms of whether they could be useful/ interesting to persons in India who are concerned about dementia and related care. These could be persons in families living with dementia. Or they could be students, volunteers, professionals, etc., who want to know more and understand more about dementia and about care realities and the culture around dementia etc.

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Broadly, I categorize the books as under:

• Textbooks, medical explanations, and books suggesting care approaches for dementia
• Information on dementia and care in languages other than English
• Experience sharing by caregivers
• Ethnographic studies and other books on dementia and care status in India
• Other books, such as fiction, humor, etc.

Most of these books are available at stores like Amazon.in and Flipkart.com; search using the book name. For books that have to be ordered directly or are difficult to search for, I have included links to direct sites.

The comments below are, of course, just my personal opinion.

Textbooks, medical explanations, and books suggesting care approaches for dementia

Handbook of dementia (eds: Nilamadhab Kar, David Jolley, Baikunthanath Misra). This is a medical textbook (second edition: 2010). Its chapters have been written by experts in the dementia domain in India. The book, to quote, “aims to provide, within one volume, a user-friendly review of current knowledge and thinking on dementia, suitable for professionals and carers working for the persons affected by dementia.” It is expected to be useful to “physicians, psychiatrists, neurologists, geriatricians, general practitioners, nurses, occupational therapists, social workers, caregivers and family members of dementia patients.”

The book is an excellent reference text covering a whole range of topics around dementia-causing diseases, behavior changes, person-centric care, etc. It is a thick book (438 pages) but that is reasonable for its coverage. The book is a collection of chapters by different authors. While writing style varies across chapters, a lay person can definitely get a lot of benefit out of the book.

In my opinion, this book is extremely useful for volunteers, students, and professionals. It is also very useful for caregivers and has many chapters that are directly useful to them. For example, in addition to discussing dementia features and medication, the book covers a range of care topics like handling behaviors, occupational therapy, legal issues, caregiver well-being, etc. Also, the book can be used as an authoritative reference to show to persons who refuse to believe there is such a thing as dementia.

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Understanding Dementia: Disease, Treatment & Care (ed. Prof Shyamal Kumar Das). This relatively slim 2009 book has chapters by different authors. It gives the reader a useful overview of various types of dementia, the diagnosis process, changed behavior, etc. It covers dementia well, and explains the symptoms in ways that are easy to relate to. The text is very readable. It also has many relevant illustrations. Coverage on how to care is low, however, and will need supplementing with other material.

The book can be useful to students and to doctors from other specialties. Its friendly, explaining approach makes it suitable even for laypersons. It may be particularly helpful to families trying to understand the problems of dementia and the challenges the person may be facing. Its illustrations and simple language make it suitable as a authentic medical book that families can use to convince persons who refuse to believe the diagnosis. The book is available through the ARDSI Kolkata chapter.See their site.

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An Insight into Dementia Care in India (Leena Mary Emmaty) provides information on dementia and care in India. It is written by a social worker. Alas, the book I have is from 2009 and I have not seen a later edition. The book gives a useful overview of dementia and care. It is based on original research and gets dense at places. It often quotes terminology and studies that may not be relevant for caregivers looking for information and practical advice.

Students of social work, nursing, gerontology, psychology, etc. can consider this book as a reference. Caregivers may also find it worth checking out, especially because there are very few India-specific dementia books in print. Caregivers will have to extract useful concepts and tips from text that is sprinkled with technical terms and mentions of research papers.

The sections on resources in India are (naturally) quite outdated.

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Information on dementia and care in languages other than English

A Gujarati book for dementia and care is available from Flipkart, titled “Chitadu Chorayu – Dementia Ni Duniya ચિત્તડું ચોરાયું ( ડિમેન્શીયાની દુનિયા) (Daksha Bhat)“. It briefly covers dementia and its symptoms and types, diagnosis, medication overview, impact of dementia, caregiving, caregiver stress, daily routine, challenges, etc., and has some explanatory figures. (disclosure: the book includes a link to my site in its references).

This is a small book with a modestly priced paperback that can help Gujarati-reading families get introduced and aligned to dementia and care. Contact Varishta.

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A Bengali book is available from ARDSI Kolkata, “Dementia Paricharyya ডিমেনশিয়ায় পরিচর্যা (Ed. Nilanjana Maulik)“. This book is for caregivers supporting their loved ones with dementia in a day to day situation. It highlights the strategies caregivers can use for their routine tasks. Topics covered include description of dementia, Alzheimer’s Disease, comparison of dementia with aging, how to interact with someone who has dementia, explanations and tips for several topics like communication, bathing and cleaning, various daily activities, healthy living, and also problems like depression, hallucinations and delusions. The book coverage is useful and impressive. Unfortunately, the book does not have any pictures or illustrations.

This is a a slender, modestly priced volume, and could be very useful for Bengali readers who want to learn about dementia, its impact, and care. It is available from ARDSI Kolkata. See their site.

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Experience sharing by caregivers (offers some perspectives of how families experience dementia,through these real-life stories)

I found three books in this category, all containing accounts of personal experience of care. All of them also include some philosophizing and analysis, a natural mechanism caregivers use to cope with the drastic dementia changes. All three books provide interesting insights into what families may experience. Keep in mind, though, that each family experiences dementia in its own unique way. They interpret and analyze the situation differently, too. So when reading such caregiver-sharing books, readers have to remember that their experience and their perspective may turn out to be quite different.

In the line of Alzheimer’s: The Mission Continues (Brig (Retd.) S P Bhattacharjya): This is the first person account by Brig Bhattacharjya, who at the age of 84 was still looking after his wife Sukla who was then 72 years old. The narrative is remarkably detailed and covers many incidents from the pre-diagnosis stage. The book covers around fifteen years of Sukla’s decline, sharing incidents, mistakes, things that worked and that did not. These include symptoms which the family missed then and only later realized may have been because of initial dementia. While sharing the anecdotes, Brig Bhattacharjya places them in the context in which they happened, shares them with honesty, and also often includes his own analysis. The book is detailed but flows smoothly and is an easy read.

Professionals and volunteers will find this book very useful to understand realities that families face. Caregivers can obtain an idea of the type of problems some families face at various stages of dementia, and the types of mistakes made. The book is published by ARDSI Kolkata. See their site.

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Krishna: Living with Alzheimer’s (Ranabir Samaddar): This is the first person account written by a social scientist who was the caregiver for his wife who had Alzheimer’s Disease. The book includes the narration of the last stages of his wife and his account of his grappling with the medical systems is honest, detailed, and insightful. The book is peppered with well-researched data and rich analysis. About the final stages, he says (pg 133): “It is a complex process by which death comes to countless Alzheimer’s patients through the remorseless operation of the means and modes by which medical business runs, the profession works, and medical knowledge prevails.” And, on pg 134: “You realize only gradually that the system is the silent killer of Alzheimer’s patients. Doctors know little about patient care, can advise even less on this, and are not willing to learn from caregivers because they think that medicine is a matter of specialized knowledge.”

The book has several chapters detailed his experiences. The late-stage care chapters, especially, are extremely valuable in our Indian context where late-stage dementia is handled at home and often requires multiple interactions with health care professionals and hospitals. I have heard of similar experiences from many families, but tired, bereaved, frustrated caregivers rarely talk about them openly, and almost never to the media, so this important problem remains under wraps. Volunteers and professionals who are concerned about supporting dementia families may not even be aware of these. The book also contains several chapters about the earlier years of dementia, both the personal side and the social side. Perspectives about “quality of life” have been discussed in a very interesting way. The book is heavy reading in parts, especially when medical data is discussed. But caregivers looking after persons in earlier stages can skip the late-stage dementia part in their first read and return to these parts later.

This book is a must for professionals and volunteers who need to understand problems that families face in the health care system. These are the persons who can help change the system. The book is also important for caregivers, who can get a perspective of how dementia impacts persons, and also a cautionary tale about dealing with medical aspects. Of course, not every family faces the same situation, whether on the personal front, social front, or medical support front–but this book can help people think about situations and how they may handle them if they arise.

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A World Within: a remarkable story of coping with a parent’s dementia (Minakshi Chaudhry) This is written by a daughter, and describes her father’s decline. The book is full of well-narrated, touching anecdotes that show various sides of the father–in some he remembers and talks about the past, in some he shows mild confusion, in some where he deteriorates further. The incidents are told with honesty and loving detail and touch the heart. The writing style is intensely personal, and anecdotes are enriched with personal musings, regrets, and insight. The love shines through alongside the glimpses of the growing problems.

Again, a worthwhile read for everyone who wants to know what a family living with dementia may experience. Of course, every family has its own journey through dementia, but this is a valuable insight into one such Indian family.

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Ethnographic studies of dementia and care in India (mainly for serious students with time and patience or others with a somewhat academic bent of mind)

These are books that discuss how dementia has been handled through the ages in India, what the status of support in India is, and how families cope with dementia even today. I found two books in this group.

No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things (Lawrence Cohen) is a book whose paperback was first published in 1999 and with a copyright of 1998 with the University of California.

As such this book did not fit my self-imposed search criteria of looking for books published in India that may be of use of caregivers. But it is one of the best books I have read. It is a book that anyone serious about the ethnography of dementia would love to read. The book is an interesting cultural analysis of aging in India. It is also very dense and a heavy read. Lawrence Cohen is a medical anthropologist who is concerned about how people “comprehend the body and its behavior in time” and the book is a detailed account of his observations and study. A must for someone serious about understanding dementia in India through the ages–anthropology or ethnography students, for example–but be warned, this is a book that needs patience, time and attention. It is not aimed at caregivers.

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Unforgotten: Love and the Culture of Dementia Care in India (Bianca Brijnath) is another ethnographic study, this time of middle-class families in urban India. It describes how these families care for persons with dementia. Set in 2014, and focused on the urban middle-class, the book may be easier to relate to by many caregivers who read this blog. It is dense, though, and full of references. Readers need to be attentive.

The book is probably best for students and researchers. Do not expect a swift or breezy read; be ready for a meandering, rich read instead. Again, a must for someone serious about understanding dementia in India. If you are a caregiver, well, this book gives several insightful and interesting caregiver stories, but it can be a heavy read.

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Other books, such as fiction, humor, etc.

These are some books that integrate dementia into fiction plots, essays, etc. Some felt authentic, some misleading, and some disrespectful.

Our Nana was a Nutcase (Ranjit Lal): This is, I think, intended to be a children’s book but I enjoyed it. In spite of its apparently odd title, the book is a delightful, sensitive, and extremely love-filled portrayal of an eccentric grandfather who starts showing symptoms of dementia. Excellent writing. It offers an impressive portrayal of early changes in dementia and how the family realizes something is awry. How the grandkids and others puzzle a bit, and then not just accept him but work hard to make sure he stays at home with them, loved as always. All the characters are portrayed well enough to seem real. For example, the grandfather is vivid as a person, and the grandchildren are fun-loving and affectionate, sometimes mischievous, sometimes disobedient, sometimes considerate.

This book is a great example of fiction that seamlessly includes persons with dementia and has characterizations that are entertaining and informative, yet without any preachiness at all. All through the book, the grandfather is a person and never reduced to being merely a patient. He is someone who is loved and very much remains part of everyone’s life.

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Some other books I checked out are listed below. While they are all related to dementia in some way, I do not find their coverage of dementia suitable for informed awareness and improved sensitizing.

Sleeping with Jupiter (Anuradha Roy): This is literary fiction, full of complex nuances. It has an overall theme of loss and searching for the past. The book does this through the stories and experiences of many characters. One such character is an elderly lady with increasing disorientation and forgetfulness. While it portraying the lady’s experience nicely, her behavior is not seen as a possible medical problem by others around her. The symptoms are not noticed as being different enough from aging. Dementia is not mentioned at all, though some reviewers have assumed it (that is how I was given the book’s reference). It is unclear whether the author was depicting her perspective of varying ways people age, or whether she wanted to depict early dementia. The book is good as literary fiction, but it is not a story that can be used to understand or develop sensitivity towards dementia.

Silver Haze (Pankaj Varma). This is related using the first-person voice of the person with dementia–the mother. The author has modeled the story based on his mother, who had dementia. He tries to imagine what she may be thinking and also describes what he thinks her past was like. The bulk of the book, in fact, is supposed to be what the mother (fictional mother) wrote after knowing about her diagnosis. This narration is smooth and rich with detail, and even includes self-awareness about her dementia. The impression the book gives is that this lady with dementia is very coherent and has excellent recall. It is as if her dementia does not affect her ability to write a complete, coherent, detailed life story (the sort of activity that would typically take months or years).

While I am not saying that this can never happen, this would be very unusual. Such a problem-free long-term project of self-expression seems unlikely for someone with dementia. It does not seem consistent with most descriptions written by persons who have dementia (their blogs, books, videos). Also, I and the caregivers have all seen our loved ones with dementia struggle with words and concepts, have huge gaps in memories, and make many mistakes in recall. So this book’s narrative voice didn’t work for me. More important, it could make readers think this is typical. They may therefore underestimate the problems and cognitive decline that persons with dementia face, and have unrealistic expectations or put undue pressure on the persons. Read this book as fiction if you want; if you want to know the experiences of persons with dementia, read their blogs and books and see their videos.

Delights of Dementia and other essays (Dr. G Lakshmipathi). This has a set of allegedly humorous essays on many medical conditions, including dementia (the essay that lends the book its title). I found the book’s humor unsuitable for stressed caregivers and even others. The book’s language around dementia is stigmatizing. Descriptions (fictionalized) of confusions and delusions caused by dementia are described as if they are a source of entertainment that a doctor can use for some sort of comic relief. I am extremely uncomfortable with the thought that someone with dementia or someone supporting them may read this book; they may feel mocked or isolated or may hesitate to contact doctors if they think all doctors think like this. My detailed book review is on amazon.in (a one-star review).

Some other posts on how dementia is covered in stories, movies, media, etc., and also some links to dementia care story sharing in India:

• Indian movies depicting dementia: some comments has detailed comments on:
  • U, Me aur Hum (Hindi, DVD available, starring Kajol)
  • Black (Hindi, DVD available, starring Amitabh Bachhan)
  • Thanmathra (Malayalam, DVD with English subtitles available, alternate spelling Thanmatra, starring Mohan Lal)
  • Maine Gandhi Ko Nahin Mara (Hindi, DVD available, starring Anupam Kher)
  • Mai (Hindi, can be viewed on erosnow.com, starring Asha Bhosle)
• Some follow-up comments on movies etc., at: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia
• Several caregiver stories, interviews, newspaper coverage, etc., all India-based, at: Caregiver interviews and voices

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Alzheimer’s/ dementia information in Assamese (selected excerpts from Dementia India Report 2010: Assamese version of executive summary)

The Assamese version of the Executive Summary of the Dementia India Report 2010 was created by ARDSI Guwahati Chapter. This report gives an overview of dementia and care in the context of India. Some selected excerpts are presented in this post for the convenience of persons who read Assamese, to perhaps interest them enough to read it or share it. View/ download an archived copy of the report: Dementia Report in Assamese, PDF file (1.1 MB)

Some excerpts from the report have been posted below.
Here is a paragraph about dementia.

Diseases causing irreversible dementia, and their typical early symptoms


Modifiable and non-modifiable risk factors for dementia

The impact of dementia at various levels

You can view/ download an archived copy of the report:Dementia Report in Assamese, PDF file (1.1 MB)

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Dementia In India, 2015: An Infographic

Information on current dementia prevalence in India and future estimates are published in various national and international reports and papers, as are discussions on the problems faced and possible actions. However, most such reports are long and dense, and reaching the relevant sections is not easy. As part of my content creation work, I have put together some salient points from across these in the form of an infographic that is quick and easy to read.

The infographic is uploaded on Slideshare and can be viewed in the player below (or directly on Slideshare at this link).

The slideshare link as well as the player above include options to share the infographic.

You can also view the full infographic on the Dementia Care Notes site at Dementia in India: An overview. The page includes various ways to share the infographic or include the code on your site.

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Ideas to support dementia care in India

As a caregiver for many years, I have shared my personal experiences and related musings about dementia caregiving through over 200 blog posts. I now work actively in the dementia domain (my work and how I support). I have also created resources for volunteers in the dementia domain.

Persons who want to support dementia care in India need helpful and practical projects they can take up. These projects should match their inclination, time, energy, and skills. This post is about my effort to create a set of potential projects they can consider.

First, some background. Many persons feel they should do something for caregivers. Unfortunately, very few are able to convert their intention and enthusiasm into action. Often, when they realize how much needs to be done, they become unsure about what specific actions can help. They want to make a difference, but get discouraged or intimidated. They then get busy in other work, or use their energy for some other cause that seems easier to contribute to.

A lot needs to be done to support families coping with dementia in India. Some of these are major initiatives, such as at the policy and Governmental levels. But individuals, NGOs, professionals, and organizations can also do many things, even with limited time, energy, and funds.

Small, clear, well-thought actions can make a real difference to at least some families. Such actions are practical, and also give great satisfaction. On the other hand, volunteers can get discouraged if they aim too high because they cannot pin down how exactly to achieve that goal. They are not able to get visible results that match their high expectations of success. So they feel overwhelmed and helpless and eventually give up.

I am therefore collecting and documenting a set of do-able ideas suitable for varied types of potential contributors. I will make this document/ presentation available online. I hope this document will provide existing and prospective volunteers at least some ideas that appeal to them and that fit their energy, funds, availability, and personality.

The tentative format for each idea (suggestions are welcome) is:

• Scope and brief description of the idea
• The problem it solves
• Who may find this idea suitable to implement
• Background knowledge needed
• Elements to plan for
• Examples and references of similar projects implemented
• Resources to contact (for data/ support/ networking/ potential associates)

Please note that I know that we need broad visions and missions and nation-level strategies and actions. We need to “spread awareness,” “support caregivers,” “ensure early detection of dementia,” and “make dementia a national priority” and so on. These visions and missions require major actions by well-networked, well-informed persons who have the required time, energy, funds, etc.

But for my current project, I am not looking at lofty intentions and large national or international scopes. I seek easy-to-pick-up ideas that can be done at a more modest and practical level. Ideas that persons reading this blog can think about doing.

The persons/ entities who may find these ideas useful are expected to be:

• Persons who want to donate small or moderate amounts of money effectively but don’t want to get pulled into too much evaluation or work
• Persons looking for areas where their organization can fund or participate in projects (such as, projects under “social responsibility”)
• Small to medium sized NGOs interested in eldercare or dementia domain
• Family caregivers who want others to not suffer (“my experience should not go waste”) but don’t have much time and are concerned about confidentiality of participation
• Concerned persons with some spare time and energy, who want to use their existing skills (communication, technology, etc.)
• Concerned persons who are interested in creative work (art, plays, etc.)
• Students, artists, and others who want to complete a small, useful project in dementia and may want this to be part of their college work/ add to their resume

Some examples of the types of ideas (to show how I am keeping the scope of my ideas simple and practical):

• Fund the translation of a dementia information brochure from one language to another, including funding the translation and the cost of experts validating that translation.
• Fund a local hospital’s neurology/ psychiatry department so that they can host monthly support group meetings
• Arrange an inter-generational sensitization trip, such as a trip of school kids to a local dementia centre
• Share your caregiving experience through comments on sites where you can share without violating your privacy (maybe anonymously). Decide to do so once a week (or month, whatever suits you).

Basically, I am starting a project to collect and document dementia-related ideas that are useful, doable, and give a sense of completion and satisfaction. Ideas you can pick up one at a time, do and complete satisfactorily, and either stop or pick up one more idea.

What I am doing: I am using my notes as well as published reports and papers (national and international) to get a starting set of ideas. I am trying to recognize do-able components of available ideas, and then select what seems important, useful, and practical to do. I am gathering data on successful initiatives and prototypes to add to this idea list.

Here is what I need from you: data and ideas. These include:

• Send me data that can help me in my research: published papers, studies, news/ accounts of initiatives that worked (or failed, and why), examples of prototypes of caregiver interventions, and so on
• Send ideas you consider practical to do. I’m sure anyone concerned about dementia has many big and many small ideas; send me ideas that you think fit my request. If in doubt, send the idea anyway.
• Send any other suggestions.

I hope you will help.

Think of something useful that can be done even with limited energy and resources, even with constraints. Consider specific ideas where you can imagine someone achieving an end result in a short time frame. Then add a comment below (you don’t have to give your name if you prefer anonymity). Even sharing such ideas as comments may help others who are looking for project ideas. Of course, you can also email comments to me (see my contact information here).

Please share this post with anyone you think may be interested.

Thank you for reading.

(For your reference, here are the links referred to above):

• Various categories of personal experiences and musing shared on this Blog
• The online resources I have created for dementia caregivers in India
• The dementia care related work I do
• Resources for persons who want to support dementia caregivers in India.

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Some information in Kannada (Dementia India Report 2010: Kannada version of executive summary

The Kannada version of the Executive Summary of the Dementia India Report 2010 was released by NIMHANS, Bangalore, in 2011. I have now made it available on my Dementia Care Notes website for ready reference by anyone who is interested. I am also including a few excerpts below, hopefully to get some of the Kannada-reading persons interested enough to either read it or to let others know about it.

You can view/ download the report here: Kannada version of the Executive Summary of the Dementia India Report 2010, PDF file (1.18 MB)

Some excerpts from the report have been posted below (snipped as images). You can click on these to view/ download the full report.

Diseases causing dementia, and their typical early symptoms

Modifiable and non-modifiable risk factors

Growth in dementia cases expected over the years (India) (numbers in millions, graphed using age groups)

Links relevant to this post:

• Kannada version, Executive Summary, Dementia India Report 2010, as PDF file (1.18MB) (published courtesy NIMHANS and ARDSI, available for ready reference on Dementia Care Notes website)
• The Dementia Care Notes website

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Using Online Caregiver Forums: Some Observations and Thoughts

Caregivers need support groups but often find it difficult to get away from their responsibilities and attend an in-person group. Their available free time may be too small a slot, or may not match the time of a scheduled support meeting. The more overwhelmed and stressed the caregiver is, the less likely it is that this caregiver can reach an in-person group.

This situation is really sad because support groups reduce caregiver isolation and provide a safe forum to exchange stories, problems, and suggestions with each other. Attending even a few meetings can transform how caregivers perceive their situation; they start finding the challenges more bearable, the changed behavior is taken less personally, and they are able to use suggestions they get from others and even generate creative solutions themselves.

Given the practical problems related to attending in-person groups, we need to examine the use of online forums for caregiver sharing and support. I am using this blog post to share my observations and thoughts, and give my suggestions, based on a number of online support groups that I have been part of–some as an active participant, and some as a lurker.

There are many types of online caregiver forums. At one end of the range, there are large forums that have structure and moderation and are handled by a group of committed persons/ some volunteer organization, and continue for years. And then we have small, informal groups that some caregivers form to stay connected and support each other, with membership varying from five or six to around fifteen or so.

Let me first share my observations and thoughts about smaller, informal caregiver groups. If you have been part of such groups, I’d love to hear from you about your experiences and impressions…

In the last five years, I have seen many instances of caregivers creating their own online groups. Some groups emerged after caregivers met during some face-to-face support group meeting or caregiver training and decided to stay in touch online. Others emerged when caregivers happened to meet online and decided they needed to get together for mutual support, and therefore gathered a group by bringing in friends (and friends of friends) or using social media. These groups were relatively informal with no active moderation. While some members were volunteers or professionals were included, they were not present in the capacity of a moderator or administrator or even an expert, just present as members.

Firstly, the groups were typically very fast to set up. Some caregiver would tell another, let’s set up something to stay in touch, and then a few of them decided on a technological platform they all were comfortable with and plunged in right away. I’ve seen email groups and Facebook groups (but not bulletin boards) getting kicked off and working full steam within days of someone suggesting starting a group.

The initial momentum was heartening. Caregivers were clearly eager to get and give support and they openly shared their situations and problems, and were generous to each other while empathizing and sharing suggestions. Conversations were meaningful and it was clear that a rapport was building. Of course, the usefulness of the group depended on the members’ availability, involvement, knowledge, and degree of articulation, but definitely most members found the groups helpful.

However, the tempo faded after a while. Participation died down even though no one specifically unsubscribed. Some queries got no responses or just perfunctory responses. Queries stopped after a while. Some subsets formed when two or three caregivers began corresponding directly/ established phone contact, but the online forum was no longer active.

One typical characteristic of these small informal groups was the lack of detailed rules and active moderation. This initially added to the sense of friends getting together, an informal air, and worked in some groups, but not in others.

There were problems, too. Everyone was not happy with the group; some even got stressed by it.

Here’s one example. One caregiver (I’ll call her AAA) was handling an aggressive parent with dementia alone, day and night, and did not have an attendant to help. Siblings had moved away and would not call. None of the other caregivers were facing such a severe challenge; they had at least some family or helper support, and not all were actually handling the daily care tasks. When AAA would post her problems and others responded, she was very unhappy with the responses because she found the responses obviously impractical given her situation (take a break, get help from your sibling) or she felt dismissed because someone would tell her to lighten up (don’t take yourself so seriously, have a good laugh instead, you’ll find it funny when you look back at it later).

After a few such responses, AAA wrote directly to me to say that the group stressed her because she had expected at least fellow caregivers to understand her problems, but now she felt even more isolated. She felt the group was not a safe space for her to unburden herself or seek help. She stopped participating there, and she and I continued our interactions on a one-to-one basis using email and phone. It was ironic and unfortunate that a support group increased her isolation.

I think one problem is the way we respond to online interactions. An in-person support group meeting is an immersive experience; caregivers see facial expressions and hear the emotion in the voices when problems are shared. Even if someone’s situation seems very different from their own, the face-to-face interaction makes it easier to pay attention and feel empathy. Selecting an appropriate response is easier, and it is easier to see when to avoid humor or realize what could sound preachy or trite or judgmental. Suggestions and comments are therefore better worded, longer, and supplemented by gestures and facial expressions that reaffirm the spirit of support.

On the contrary, in an online forum, people may not read posts/ mails carefully, or may type a hasty reply without grasping some key facts from the original post, or may sound harsher than they intended to. Or, even if they write well enough, the person reading it may be oversensitive about some phrase or suggestion, and feel hurt.

My impression, based on my (limited) experience, is that small, informal online groups function better if the members have met each other or talked to each other before interacting through the forum, because even a few earlier interactions or in-person meetings make them more willing to share experiences and create trust. They are also less likely to take offense or interpret responses as put-me-downs.

The problem AAA faced is only partly because of the characteristics inherent in the online mode of interacting. There are other factors, too. We use the word “caregiver” as if all caregivers were the same, but there is a vast diversity in caregiver situations. A small, informal online group of diverse caregivers does not include enough members who can understand and support each other for every type of care situation.

Another thing that made me uncomfortable in some of these groups was when members posted specific suggestions and advice on medication and alternate treatments. These alternate approaches were projected as medically sound, but were recommendations that I knew were scientifically suspect. Data posted to counter the claims was seen as obstructing “helpful” advice. I felt that this was the sort of situation that would typically warrant intervention by a knowledgeable moderator, but the group was not structured for moderation.

None of the groups inducted new members except for a token few in the beginning. Meanwhile, existing caregivers “moved on.” Caregivers don’t need help from the group once the person stabilizes and they get the knack for handling the situation. Or if the person reaches a different state for which the existing support group is irrelevant. Or the person dies, and the caregiver has to resume a career or rebuild a life. My impression was that existing members were not keen on new members because that would be adding an unknown factor in a group that had some sort of rapport.

Let me now share some observations based on a much larger, structured group with formal rules and guidelines on what sort of posts and language are allowed, and with moderators overseeing group functioning. Members include several caregivers coping with diverse care situations.

As in the smaller groups, I saw the participation of individual caregivers change a lot over time. Some rarely posted; others posted actively for some time but then reduced participation or even stopped it; some were sporadic in participation. However, as the number of caregivers was very large, and as new caregivers kept joining, the interactions remained vibrant and helpful. No query remains unanswered. The moderators, too, actively participated and keep the flow of exchanges going.

No group can be free of misunderstanding, and I did see occasional posts that seemed judgmental or harsh but usually some other member or moderator responded almost immediately to express enough empathy with the original poster and related query, thus diffusing any possibility of hurt. Inconsiderate comments were not tolerated. Spam messages or misleading promotion of dubious cures were similarly handled by moderators and other group members.

As I write mainly out of concern for caregivers in India, I must note one problem: the membership in the larger caregiver forums is usually from outside India, and many of the queries and comments assume a very different culture and very different types of system and support. Discussions on end-of-life care, legal and financial issues, use of services, availability and regulation of helpers, all are based on a very different set up. That means many suggestions can be used only partially.

So what can I suggest caregivers in India who are looking for online support?

Firstly, online support groups as such are definitely worth considering. Online groups provide 24×7 availability of a forum to post. The sense of community helps. You may get empathetic responses and feel less isolated, and you may get some useful responses.

If you already know some other caregivers with whom you share some trust/ rapport, getting together and creating an informal online group is worth considering. Of course, expectations need to be limited, and such groups may not suit caregivers whose situation is very unusual and different from that of all the existing members. And members need to understand that such groups cannot be depended on for medical advice.

Also, please do look at existing dementia forums/ caregiver forums run by volunteers/ organizations/ groups of concerned persons. They will reduce your sense of isolation and give you some idea of the problems and solutions others use. Even when the exchanges in such forums don’t always suit your context, they could contain useful pointers. Also, look for online support groups set up for special situations, such as for specific types of dementia (Lewy Body, FTD).

A good approach is to join multiple groups, and understand which type of need each of them can meet. Use these groups depending on the fit, participating according to where you feel comfortable sharing your problems and also sharing your suggestions for the problems others face.

Here are a few things to keep in mind before participating in an online group.

Groups have different degrees of privacy, and even if a group is supposed to be private and if posts are kept private and confidential as per the technical platform used, ultimately the actual implementation depends on the other members, too. If you are posting something very personal, and are very particular that no one should be able to link your posts to you, consider groups where you can use a pseudonym and do not share details that could identify you.

Some groups (such as groups on Facebook) may be confidential, but you need to enroll with your real name. Members can click through your name from a post you made in the group and see your public profile. Keep that in mind if that seems to be a problem to you.

Also, in very large groups, keep in mind that your family members and friends (or their friends) may also join. Keep that in mind when posting details or rants.

Well, those are my thoughts and observations related to caregivers considering online support groups, and I would love to hear from you about what your own experiences have been on the effectiveness and usefulness of such groups, or your suggestions to caregivers on this.

If you are a concerned person trying to help persons living with dementia, you may be considering setting up an in-person group or an online group. I have created two draft documents that put together my thoughts on what setting up and running online groups and in-person groups involve. Both these documents are available online and also for download, and you can refer to them. I would appreciate any comments you have, so that I can refine the drafts and release improved versions. The page where you can view the documents or download them is here: Create dementia care support groups (includes download). The two individual documents are available for download at Setting up and maintaining an online caregiver forum to support dementia caregivers (PDF file) and In-person Dementia Support Group Meeting Guidance Document (PDF file).

I really would like to hear from you, either as comments below or as an email (check my contact page to know my email id).

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