Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia

Last month, I had the opportunity to hear the renowned filmmaker, Jahnu Barua, talk about his film, Maine Gandhi Ko Nahin Mara, a Hindi movie where Anupam Kher plays the role of a person showing dementia symptoms. (Jahnu Barua Wikipedia profile and his website). This talk was on the occasion of ARDSICON 2013, the 18th National Conference of Alzheimer’s and Related Disorders Society of India (ARDSI), held in Guwahati in November 2013.

In an earlier blog post I had commented on this film and said that I found the film to be an excellent depiction of dementia and its impact on the family, but also expressed discomfort about the final scenes and their implication. I was, therefore, very curious to hear Jahnu Baruah’s talk on his approach to the topic.

Maine Gandhi Ko Nahin Mara is the story of a retired person (played by Anupam Kher) who starts behaving very strangely. He believes he has killed Gandhi and is currently imprisoned because of that crime, and shows a range of emotions like aggression, paranoia, withdrawal, wandering, while also failing to recognize family members. The distraught family consults a doctor and gets a diagnosis of dementia/ pseudodementia. The movie ends by showing a creative solution where Kher undergoes a trial in a rigged-up courtroom scenario to help him get rid of his obsession that he killed Gandhi, supposedly a major trigger for his situation. The solution is shown to work. This aspect (of such a solution being tried and its working so dramatically) had left me very uncomfortable, as I was unaware of any research or experimentation that supports possible efficacy of such solutions.

During his talk, Jahnu Baruah talked about how he got the idea for the film (he wrote the original screenplay and he directed the film). He shared some episodes where he unwittingly interacted with persons with dementia, including one who thought he was a murderer. Intrigued, he began learning about dementia and its impact on the person and family, and met many persons in this context. He did extensive research. As he then started thinking of a movie where the protagonist has dementia, and he decided to add a dramatic solution at the end. Some excerpts of what he said (yes, I took notes):

…I extended it with my wishful thinking that such cases have to be cured. Something, at least, to minimise the pain, and then I thought of creating something, a drama…

…whether it can happen, I don’t know, but it is only my wishful thinking and I always feel there should be a way.

Jahnu Barua also shared how, after the film, someone asked him, “Do you think it is possible?” (referring to the impact of the courtroom drama on the dementia symptoms). Jahnu Barua told us that he had answered: “I’m just a film maker, not a doctor, this is just my wishful thinking.” He had a positive feeling about the film he had made, and “whether it can be done or not, that is another aspect.” As I, too, had wondered about the movie’s end but hadn’t thought of trying to contact the movie’s director, I guess I was plain lucky to hear Jahnu Barua’s clarification, 🙂

In this context, I am reminded also of another excellent movie, Thanmathra (Malayalam, my detailed comments on it available here). This movie depicted early onset dementia, and is often quoted as a very instructive movie on dementia by doctors in Kerala. However, some doctors were unhappy at some aspects of the way dementia was depicted. The director, Blessy, responded to those comments in an interview, saying: This is not a documentary, so I am allowed to take certain liberties. (full interview here)

So true. We need to repeatedly remind ourselves that movies and stories are fiction, not documentaries. Movies are creative endeavours. They depict the world as envisaged by the script writers and directors, and explore “what if” scenarios.

Again and again I hear people say, we need more movies showing dementia, almost as if we can depend on movies to spread awareness. We forget that viewers of movies don’t know enough to distinguish factual aspects from creative extensions. Movies don’t come with detailed disclaimers and notes.

If we want to spread balanced awareness about various aspects of a condition, we cannot depend solely and undiscriminatingly on fiction. We don’t substitute physics and biology classes by sci-fi movies, do we? Movies may help spread information about some aspects, but not about all aspects. They may be incomplete, non-representative, or misleading if assumed to be gospel truth. To spread awareness of dementia, we need well-made documentaries, recordings of interviews, and documented case studies. We need easy-to-read validated informational booklets. We need celebrities sharing personal struggles. We can also have stories that are specifically designed just for spreading awareness, validated by professionals. And we may need a wide range of such stories because the dementia story is not a single story. Every patient, every family, every situation is different in some aspect, and a range is needed to give a completer picture.

Of course, people will still watch movies and assume that anything depicted in them is correct, even though the film makers do not claim their movie is a medically accurate depiction and very clearly state that they are using the media to express their creative needs. Watching a well-made movie is an emotional experience, and for the three hours we sit entranced, our world is the movie world, our reality the movie reality, and the intensity makes it difficult for us to later remember that part of what we saw is just a fictional extension, a creative exploration…

Because movies showing dementia may be seen as complete, correct, and representative depictions of dementia and care situations, I made an earlier blog post where I gave detailed comments on five Indian movies showing persons with dementia. I described areas where I found the movies reasonable in their depiction of dementia, and also where I felt the movies missed on some elements or could be misleading because of the drama/ fictional elements required by the plot. This post can be seen here (Indian movies depicting dementia: some comments) and includes detailed comments on the following five movies:

Another related post is: Poor awareness and the danger of very few representations.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Indian movies depicting dementia: some comments

I recently read a review of a movie where a main character has Alzheimer’s Disease, and the reviewer stated they were giving it a higher rating because it helped them know more about Alzheimer’s. That comment reminded me of my earlier blog post about how, when awareness about a disease is abysmal, any depiction (movie, book, whatever) is seen as authoritative and informative, and viewers/ readers assume that the patient shown is “typical.”

No single depiction, no single movie can give the range of possible presentations of dementia or its progression or its impact on the person, their family, and others. Placing the burden of such information on a single story is unfair. We cannot assume that a movie’s depiction of a disease is correct, complete, and representative. The movie industry is not making documentaries; they are trying to create an interesting (and believable) story with enough twists and turns in the plot.

Unfortunately, when people see movies centered around a disease, the images and actions stick to their minds; they even quote movies as an authoritative depiction 😦

This blog post contains my detailed comments on the movie depictions of dementia in some Indian movies. My comments are not on the movies/ storyline/ plot/ acting, but focus on whether (in my opinion) the situation depicted is realistic enough to be treated as one data point while trying to understand dementia and its impact.

From what I know, there are currently six Indian movies where a main character has dementia (Alzheimer’s, some other dementia, pseudo-dementia) and shows the symptoms. These are:

I haven’t managed to see Dhoosar yet, but below I give my comments on the other five. I’m only sharing my view on their depiction of a situation of dementia and the environment/ responses/ care around it. Again, I emphasize that I’m not looking at the acting or plot/ pacing/ photography and all that, but at whether (in my opinion) the movie may be useful for someone who expects some insight into dementia and its impact on the patient/ family/ others. While discussing this aspect below, I’m not trying to describe the movie in detail but I’m also not trying to hide the story, so if you have not viewed the movie yet, please be warned–there may be plot spoilers below.

Of the five movies I have seen, I consider three movies worth seeing for dementia/ care. None of the movies cover all aspects (onset, progression, problems/ conflicts created, and finding dignified approaches to cope), but they contain (in my opinion) a reasonable amount of material to give an idea of the challenges involved. Below are what I consider the strengths and gaps of these movies for this “dementia/ care understanding” scope.

Maine Gandhi Ko Nahin Mara, starring Anupam Kher,(Wikipedia page here)

Maine Gandhi Ko Nahin Mara is not a film focused on dementia. It is a film with a social message (though this “moral” is not obvious till near the end). The film has won awards and critical acclaim.

Though the film’s “message” is unrelated to dementia, the protagonist, Anupam Kher is shown as having dementia. The film does a tremendous job of depicting initial symptoms, a spurt in the symptoms, the problems the family faces, how the family rallies around and reaches out to him.

The movie starts by showing Kher as a loving father facing distinct cognitive problems. He retired some years ago, but he walks into a lecture room and talks to a science class about Hindi literature. At home he calls out to his wife, forgetting that she is dead. But he is able to remember his favourite poem and he has the energy and enthusiasm to take up the challenge of rolling out a perfectly round roti. We see the family, the love and affection between them. There are embarrassments, but they are minor, till one day something makes Kher deteriorate rapidly. Things keep getting worse. The daughter’s boyfriend leaves her, she has problems continuing her work. At home, things get increasingly challenging. The father sets fire to newspapers. He gets paranoid about poison and thinks he is in prison, keeping on protesting that he did not kill Gandhi. He wanders off. Doctors are consulted. Family members have some differing views, but they get together to cope. The daughter manages to remain connected with the father (in spite of his dementia) and he trusts her. Finally, a doctor, after studying him and his situation, suggests an experiment to rid Kher of his conviction that he’s in prison because he’s been found guilty of killing Gandhi. In this penultimate scene, a courtroom scene, Kher conveys the message that he has designed this film for. The film ends after this scene, showing Kher much more coherent and happy, able to recite the poem he used to recite earlier, when the film started.

I see this film as having two parts. The pre-courtroom scene shows dementia behavior, the impact on Kher and his family, and so on. All through this, the dementia depiction is excellent. But the film is ambiguous about how the courtroom scene impacts Kher. Does his condition just revert him to where he was earlier, in mild cognitive decline, having resolved the incident that made him deteriorate rapidly? Or is the film implying that he is now perfectly free of his cognitive problems and confusion? The film does not make this clear–and that is not the focus of the film–but for someone viewing the film to understand dementia, this ambiguity can be confusing. The viewer may carry an impression that dementia can be cured by such dramatic interventions, which is probably not what the makers intended, and is anyway erroneous.

The film is relatively non-committal about the diagnosis. The phrases used a few times are “dementia, pseudo-dementia, Alzheimer’s kind of dementia” but nothing more definite is said, and the diagnosis process is not shown in detail. However, the doctor does get involved in how the family members can interact with someone delusional/ difficult to communicate with; he even shows by example. (Pseudodementiais a term used by some doctors for situations where dementia symptoms are caused by some treatable underlying cause. The term is usually used for depressive pseudodementia, where treating the depression can remove the dementia symptoms: Wikipedia page here)

I think this film is excellent in the way Kher depicts dementia. It does a very good job of showcasing how dementia impacts the family members personally and socially. Most interestingly, it also shows how family members rally around to cope and how the daughter finds ways to calm her father and support him. If it weren’t for the vague treatment of the diagnosis and of the impact of the experiment on the overall condition, I’d unreservedly recommend this movie for understanding dementia. Even as it stands, though, I feel this is a great movie for dementia so long as viewers are cautioned not to assume that such drama is a “cure” for dementia.

(Note added in December 2013: I attended a talk by Jahnu Barua who wrote the original screen play and also directed the film. His talk confirmed that the “solution” shown is his wishful thinking, and that he doesn’t know whether it can happen. Read my blog post on it: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia)

Thanmathra (starring Mohan Lal) (Wikipedia page here)

Thanmathra is a Malayalam film available as a DVD with English subtitles. It is a critically acclaimed award-winning film.

Mohan Lal is a very intelligent and active person, very popular. He is an employee in a Govt. job, who had not managed to get into IAS and hopes his son will do so. The film shows him as an active person, and then shows him slipping and facing cognitive problems. Mohan Lal’s portrayal of the early symptoms and how they impact him is very sensitively done. We see his hesitation, his doubt, his increasing gaps in memory and his mistakes/ confusion. He even approaches a doctor, who assumes it is stress. But then he deteriorates further, and we see the diagnosis and the doctor’s advice on care, all very well done.

The movie, which is very detailed in its depiction of this early stage of the dementia, then rushes past while depicting the rest of the dementia journey. The main challenge, the main tragedy is what the disease does to the man. The acting is excellent.

The movie shows early onset Alzheimer’s, where a man still in his earning years, is now out of job, unable to earn, and needing care. The financial, social, and personal impact of someone so young getting dementia are shown, but are not emphasized on in ways that (in my opinion) would hit viewers hard enough to make them ponder. The main earner of the family stops earning, where will money come from for the family, the patient, everything? What of the children and their education? We see his young son having to take tuitions, and his ageing father having to work hard, but these impacts are relatively muted. The son goes on to achieve what his father wanted him to achieve. The daughter seems loving and reconciled to the situation. The loss/ diminishing of the father figure does not seem to have adversely impacted the children. Internal family insecurities/ conflicts/ major problems/ setbacks are not prominent.

The Thanmathra story is set in Kerala, where dementia awareness is probably the highest in the country (they have many “chapters” of ARDSI, for example). The movie includes a few incidents where people are insensitive/ unbelieving, but the overall sense conveyed is one of a supportive family and society. The relatively high degree of support from friends, colleagues, family, and relatives shown in the movie may be true in Kerala (I hope it is so), but is unfortunately not as true for most of India. Basically, Thanmathra shows a far more understanding and supportive environment than most families of early onset dementia are likely to encounter, and to that extent, we do not see some of the tough, heart-breaking situations such dementia often results in. Viewers need to keep that in mind.

Mai (starring Asha Bhosle) (Wikipedia page here)

Mai is a very recent film where Asha Bhosle plays a 65 year old mother of four who has Alzheimer’s. The movie is a family drama, and has not been received well at the box office or by critics, many of whom called it a mediocre story. Mai (the mother) was living with her son, though she had 3 daughters in the same city, but then the son says he cannot handle her as he has an assignment abroad, and Madhu, the eldest daughter, decides that Mai should not live in an old age home, and brings her to her home. The rest of the story is about the conflicts and drama around this decision, and Mai’s behavior/ deterioration.

The movie does a good job when considered from the point of view of understanding how Alzheimer’s may affect the patient and her behavior, and how such changed behavior is perceived by the family and how they respond. The way Bhosle hides things, accuses the maid, seems normal to the granddaughter’s friends, wanders off, gets disoriented about time, place, and people, all vividly depict how some patients behave. The medical angle is well done and fairly complete; we see the doctor asking her questions to diagnose, and also telling the daughter what to expect. There are a few short-cuts, of course, (I doubt any doctor will, based on one day’s confusion on how to wear a saree, declare that a patient’s Alzheimer’s has reached stage 6), but then this is not a detailed documentary 🙂

The film depends on conflict between family members and their resentment about care, and depicts the son-in-law and granddaughter resisting Mai’s presence. There are sideline issues on whether the son was negligent and irresponsible. Interestingly, the mother deteriorates pretty rapidly on coming home with Madhu, but this angle is not explored fully.

If you are viewing the film to understand dementia and its impact, please note that the family depicted here is not approaching the situation in a wholesome way. They do not communicate/ discuss what is involved in bringing Mai home. There is no attempt to understand her state and problems from the brother’s wife before bringing her home. The home is not adjusted to make her stay comfortable and safer. They don’t try to communicate with Mai–the son-in-law and grand-daughter stay distant, and the daughter is always tense and snapping at everyone. They take no precautions against wandering even after the diagnosis and being warned by the doctor.

The family situation/ reaction is understandable, of course, because families do take time to adjust to the diagnosis and sort out differences. But for someone trying to understand how such a patient can be helped, the film can be distressing/ misleading/ depressing, because while it gives a good idea of the problems, it does not let viewers know that there are ways to improve communication, reduce conflict, and improve the quality of life. I point out this gap because if the film is being seen as “instructional” it may leave an impression that nothing can be done to adjust with or to help someone deteriorating with Alzheimer’s.

In all the three films I mention above, we see only early onset dementia. We don’t see dementia hitting people already old (Kher is a recently retired professor, Mohanlal is still in his forties/ early fifties, Mai is just touching 65). We don’t see some aspects of dementia that are probably not audience-friendly–urinary incontinence, for example. Or bedridden patients. Any tough decisions of late stage are avoided (entubation, end-of-life decisions, major financial trade-offs). The focus of depiction is symptoms of early or midstage. Viewers need to remember that movie depictions are incomplete and stay clear of sordid details, and that every case is anyway different. These movies are more suitable for glimpses of dementia and its impact, and not so suitable for families who are wondering how they will handle the dementia care for someone already well into dementia and heading towards late stage dementia.

I do not recommend the following two movies for an understanding of dementia, though of course, the movies may be enjoyable; both the movies have received good reviews and critical acclaim, and viewers and fans have enjoyed them. My focus, as I have said earlier, is seeing them in terms of their depiction of dementia/ care.

U, Me aur Hum (Wikipedia page here) is essentially a love story where love conquers all. In this movie, Kajol is shown as forgetting things right from the beginning (she’s young still, probably in her twenties). As time goes on, she marries and has a child. Meanwhile, there are some episodes of wandering/ other problems. The baby almost dies because of her disorientation. A doctor suggests institutionalization. Decision point. Hubby, after some initial wavering, decides against institutionalization, love conquers all, and problems vanish and we then see Kajol with a grown-up son. She looks well-groomed, alert, full of cheer and humor and smart enough to pretend and have a good laugh. Happy ending.

Developing Alzheimer’s in the twenties is very rare, and the point to note is that such extremely early onset is definitely not typical. Most dementia onset is much later in life. Even the “early onset” dementia usually starts later than this, when the persons are in their 40s, 50s, and 60s. For example, here’s a quote from Mayo Clinic:

Of all the people who have Alzheimer’s disease, only about 5 percent develop symptoms before age 65. …Early-onset Alzheimer’s has been known to develop between ages 30 and 40, but that’s very uncommon. It’s more common to see someone in his or her 50s who has the disease. From: Early-onset Alzheimer’s: When symptoms begin before age 65

The movie depicts Kajol as someone who is well-groomed without assistance, alert, coherent, articulate, and able to pull through a joke without any fumbling in a room full of strangers over two decades after her symptoms had been severe enough for her to wander and to almost let her baby die because of her disorientation. All scenes depicting Kajol’s disorientation and problems happen in the first few years of her dementia; once the husband takes the “love” decision, things perhaps improve magically. I’m amazed. While some persons with dementia remain functional and active for years or even over a decade, they do need support and assistance, and the movie is quite a stretch, far from a depiction that viewers may find useful to understand dementia.

The movie shows none of the problems the disease brings in day-to-day life, especially in a nuclear family with a working husband and an infant being brought up by someone whose disorientation has almost killed the baby in the past. How the husband’s miraculous love manifests in daily interactions and with her condition changing is not shown. Challenges of care are not shown. Challenges of her connecting to an infant given her condition are not shown. Though the movie has received good reviews and may be liked by some people as a love story full of hope and miracles, I do not recommend this movie to educate someone on dementia or related care.

Now, my comments on Amitabh Bachchan’s Black. (Wikipedia page here) It is important to note here that Black is not a movie about Alzheimer’s. The movie centers around Rani Mukherji and her multiple challenges and on AB’s role as a teacher, and that is what has won it accolades.

From what I can see, Bachchan’s developing Alzheimer’s Disease is something required to complete the story arc– the teacher becomes the helpless, uncommunicative one, and the student is thrust in the role of possible helper. The onset and progression of Alzheimer’s is not fleshed out or “complete” enough to provide a good instructional window into the condition. There are some very good scenes where Bachchan shows the early confusion/ disorientation, but then, we see nothing of how he deteriorates. We don’t see how he handles his everyday life (and how that suffers) after the onset of the problem. We see a bit of him after his dementia is advanced enough for him to have forgotten his name, but the episodes shown are too few to make this movie worth watching from a dementia education angle. The medical situation is barely dwelt on. The movie is really about Rani and her condition, and her maturing and becoming responsible and empathetic.

Black has been appreciated by critics for its acting and for depicting the very unusual situation of a teacher educating a child with multiple disabilities (it is dedicated to Helen Keller, as per the movie credits), and the movie deserves every bit of praise and critical acclaim. My focus here, however, is considering whether someone should see the movie to learn about Alzheimer’s, and I don’t recommend Black for this mainly because of the scanty coverage of this aspect.

I must confess, too, that I had one major personal discomfort while watching the movie: in one scene, Bachhan is shown with his hands chained to the bed with clanging metal chains. The hospital staff probably does to ensure that the utterly disoriented man does not wander, but showing this seemed to me to depict an institution-approved approach to stop wandering. I found that scene utterly repulsive/ disgusting. I don’t know whether there are places that use such methods (I hope not), but even if they do, showing them in a movie adds to the stigmatizing and possible mistreatment of persons with dementia. I definitely don’t want viewers to think that dementia as an illness where chaining patients is advisable/ normal/ correct/ acceptable; because of this very brief scene alone I’d veto this film as “instructional” about dementia.

Again, as I’ve said earlier, it is wrong to treat any movie, howsoever well-made, as a documentary on a disease. Stories are written to depict interesting characters in interesting situations, with drama and conflict and growth and all that. We cannot rely on films to convey awareness or give authoritative information on a disease; for that we need documentaries. We need to bring dementia and care into the mainstream in terms of visibility and discussion. But the fact is that viewers do end up assuming the depictions are correct, complete, and representative, hence this post.

Related post: Poor awareness and the danger of very few representations

Related post added in December 2013: Information, creativity, fictional imperatives, hope: Considerations while using movies to understand dementia

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Poor awareness and the danger of very few representations

Some months ago, as part of the dementia articles that appear during the September Alzheimer frenzy, I saw an online newspaper article that (wrongly) gave a major symptom of dementia as “severe headache” in a boxed set of bullets. Curious, I read the article and discovered that the reporter had interviewed a dementia patient who also had a brain tumor. The detailed report did not claim headaches to be a dementia symptom but whoever formatted the article and added the box of bullets was probably a different person–someone in a hurry and with no knowledge of dementia.

I wondered about the persons reading the article, who may carry the impression that dementia results in a headache. And since then, I’ve been pondering about how much the accuracy and scope of representation matter for subjects where awareness is low.

I have worked in software organizations and consultancies and done assignments in a variety of settings, like manufacturing units and hospitals. If I read an article on these, I don’t get swayed by some dramatic fact; I place it in the context of what I know, and then decide how much weight to give this new input. But when I read something about a setting I know nothing about, my first tendency is to assume that what I read is both correct and representative, and it takes me a conscious effort to critically examine what I have read and to do fact-finding; I don’t have the energy for that often, and so the first (and probably faulty) impression stays.

So when I was a child and I saw movies showing cancer as the instant trope for death and dejection, as a hopelessness, I assumed that to be right. I even remember that when someone told me I was cancer, I was terrified I was about to die. (They meant the astrological sign). Similarly, I had mental pictures of bars and drinking (Helen-like dancers gyrating and drunk heroes sulking), of mental problems, and of zamindaars.

Read the full post here