Storytelling and dementia – ‘Burnt Sugar’
Written by Dr Karen Harrison Dening, Head of Research & Publications at Dementia UK.
I await the outcome of the Booker Prize results with relish and annually challenge myself to at least have read the final shortlisted books. Interestingly one of those shortlisted this year included a novel that featured a character with dementia.
Burnt Sugar by Avni Doshi is the story of a mother–daughter relationship spanning several decades. The story is based in Bombay, India, and tells of the mother Tara’s arranged and loveless marriage, which fails.
Tara is a child of the sixties and eventually resists the constraints of culture and tradition of her marriage and joins the community of an ashram, taking her young daughter, Antara, with her. Tara immediately enters a relationship with its spiritual leader and abandons her daughter to the care of other community members.
Antara is badly affected by this maternal abandonment; an affect that she carries through into adulthood in an ambivalence to her relationship with her mother. There are many other emotional traumas experienced along the way as Antara grows up at the hands of her mother. So, as her mother starts to display signs of cognitive impairment, Antara struggles with the dilemma of providing an increasing amount of care and support for a mother whom she feels failed to care for her as a child. Running through the novel too is a strand that questions whose reality and memories – mother or daughter’s – is the truth.
Fascinating for me is the context of the story being in Bombay, India. Having visited India five times in the last eight years, the novel captures the culture, smells, colours and noise of the country really well. Observing how a daughter struggles to care for a mother, whom she felt never cared for her, within the context of another culture and country is both familiar yet unfamiliar when comparing to a UK experience.
The novel offers the reader an insight into what it might be like to experience dementia and its care in another country. What is compelling is that it shows, irrespective of culture and country, the tensions for a daughter in caring for a parent where there has historically been a difficult or loveless upbringing.
What was clear in Tara and Antara’s story was that there was very little post diagnostic support, with Antara left very much to navigate her own way through the issues and challenges she faced. This is something we are familiar with at Dementia UK, with many families facing dementia unable to get the right information and tailored support for their situations. The fact that these issues are occurring in other countries just illustrates the scale of dementia, and the unpreparedness to provide critical support.
A complex and perplexing read but well worth it.