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.

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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.

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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.

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

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.

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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.

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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 behavior, increased dependence, reduced mobility, possibility of early onset, possibility of initial symptoms other than memory loss, 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 like persons not being able to do even simple tasks, incontinence, inability to swallow, 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.

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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.

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References

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Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on leave 😦

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  (ETA: The survey is now closed, and the link has therefore been removed)

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

Read the full post here

Where dementia caregivers in India need help

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

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

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

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

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I’m doing this post to capture the insights so far, and if any additional responses I get later provide any additional insight, I will add another post later.  

So far, for this first batch of 17 responses, the counts fell in two clear categories.

Most respondents chose the following options:

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

And fewer chose these other three options:

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

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

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

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

Preparing for the caregiving role

As a caregiver, the most unpleasant phase for me was when I acted as a functional caregiver.  I tried my best to do things right, but had not grasped the full impact of the disease on my mother’s personality and behavior, and didn’t know how to avert or handle challenging behaviors. I used  ‘common sense’ and rationality, and when they failed, I got frustrated, irritated, angry, exhausted, or just depressed. Those emotions didn’t help, either. 😦

I was stressed, and struggling to keep a normal life running so that this stressful activity did not swallow me up.

The switch happened when I sat down to review my life and saw how all-pervading the impact of my caregiving role was. My social life had vanished, my circle of friends pruned down significantly. I had been forced to adjust my career direction and intensity dramatically. My mindset had changed, my emotional and intellectual mind-share had changed.
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shifting roles in caregiving

This month is a month of introspection for me as I look back at the years I have been caregiving.  Like most caregivers I made mistakes, got overwhelmed and exhausted. I won’t even try to count the number of times I was angry (not just irritated or frustrated), unable to handle ‘difficult behavior.’

One interesting thing I notice in hindsight is that there were distinct phases in my caregiving role, and that as I progressed along these, caregiving became more meaningful and fulfilling, and less irritating and exhausting.

To begin with, I did not even think I was, or would become, a caregiver. Perhaps I can call that phase as absent caregiver 🙂 This was when my mother’s behavior showed anomalies and caused problems, but I thought they were because she was getting old (all old people have memory problems, don’t they?), or felt she was being uncooperative, egoistic, and stubborn. The doctors had mentioned atrophy and ataxia, and I did not understand (or want to understand) the impact on her ability to do things. Her strange acts were sometimes amusing, sometimes an embarrassment or an inconvenience (sometimes severe). I kept my distance, coped with it, and planned no further.
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learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.
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When families need attendants to help them care for dementia patients (India)

One common problem caregivers face in India is finding nursing attendants who will take care of the dementia patients. Such assistance is needed when the dementia patient is in the middle or later stage and cannot be left alone because the patient may need help with activities of daily living, or is otherwise prone to wandering, and the family members cannot do this kind of care giving full-time.

In India, people employ a untrained maid in the beginning for such help, but once the patient starts getting incontinent or otherwise difficult to handle, we usually get a nursing attendant from a home nursing agency.

The problem is, even ‘trained’  attendants are rarely trained to care for dementia patients. Most attendants have undergone a week or two of training, and while they know about first aid, home nursing and bed sores, they do not know about dementia. So, faced with a dementia patient’s difficult behavior, they take every frustration, every anger, as a personal insult. When the family members say this is a disease, they do not believe it. They get upset and this comes out as either agitation with the patient, or depression, and the situation escalates. Most stints by attendants are short-lived and end with sorrow and bitterness as the attendants cannot cope with the situation.

Based on my experience, and experience of other caregivers I have talked to, here are some suggestions for family members who need attendants to care for dementia patients:

Gather resources: Every city has some resources that can help: To get information on support groups, societies, nursing agencies that can help you understand caregiving better and know where to locate attendants, or equipment and supplies you need to caregive, you can:
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