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.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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

  1. Pingback: Indian movies depicting dementia: some comments | Swapna writes...

  2. Pingback: Poor awareness and the danger of very few representations | Swapna writes...

  3. Pingback: Information and stories on dementia and care: Books from India | Swapna writes...

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