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Unforgotten: Love and the Culture of Dementia Care in India

Bianca Brijnath
Copyright Date: 2014
Edition: 1
Published by: Berghahn Books
Pages: 240
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  • Book Info
    Book Description:

    As life expectancy increases in India, the number of people living with dementia will also rise. Yet little is known about how people in India cope with dementia, how relationships and identities change through illness and loss. In addressing this question, this book offers a rich ethnographic account of how middle-class families in urban India care for their relatives with dementia. From the husband who wakes up at 3 am to feed his wife ice-cream to the daughters who gave up employment for seven years to care for their mother with dementia, this book illuminates the local idioms on dementia and aging, the personal experience of care-giving, the functioning of stigma in daily life, and the social and cultural barriers in accessing support.

    eISBN: 978-1-78238-355-0
    Subjects: Anthropology, Sociology, Public Health

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-vii)
  3. List of Illustrations
    (pp. viii-viii)
    (pp. ix-x)
    (pp. xi-xii)
    (pp. 1-11)

    My grandmother Hazel died on 4 March 2012. These heartfelt words are from my cousin’s note that was read at her funeral and slipped into her casket. Arriving at this sad and solemn moment was a long journey for my family, one that has extended well over a decade. We observed the loss of a woman – physically, mentally and relationally – and with each loss, my grandmother has demanded from us an explicit acknowledgement of what it means to care. Her every deterioration, the pneumonia, the fractured hip, the infected gums, the shuttered eyes, exacted a toll. But we were not...

    (pp. 12-37)

    I kept diaries from 1 January 2008 to 10 October 2008. Volumes were filled in coffee shops, temples, stairwells and at my desk, on my fieldwork experiences, frustrations and longings for Australia and my de facto partner, who was on his own fieldwork adventure elsewhere. These journals gave me great comfort, offering an avenue to vent and tangible evidence of my efforts at gathering data. I am deeply attached to them. To my mind they signal my anthropological rite of passage and offer an insight into the messiness of my personal growth. I see in these diaries honest descriptors of...

    (pp. 38-58)

    Shafia Khan and Josie Dharam Singh live in south Delhi. They are women in their fifties, caring for their husbands, who are in the late stages of Alzheimer’s disease. At the time of writing, Josie has already lost her husband; ‘Su’ (shortened from Surinder) has died. In all likelihood, Shafia is now a widow too. Both struggled to care for their husbands and will now struggle with widowhood and a new way of living at midlife. They have both lived with Alzheimer’s disease and sickness, managing not only their husbands, their families and themselves, but accomplishing the financial callisthenics necessary...

    (pp. 59-86)

    Ilāj(pronounced e-laaj) means ‘cure’ and ‘to treat medically’ in Hindi, Urdu, Persian, Arabic and Turkish. It is frequently used and articulates a dream of regeneration against a backdrop of slow degeneration. Every family sought anilāj. For some, like Tandon, it had become the ‘ultimate objective’ that defined their lives. The quest for anilājwas also a search for hope and usually began during diagnosis, when families went doctor shopping in a bid to find an alternative to the narrative of chronicity, decline and long-term care that confronted them. Long after the diagnosis had been accepted, this search...

    (pp. 87-115)

    I use three concepts to analyse the economy of dementia care in India – cost, identity and exchange. Cost is understood as the value associated with the material objects used in care (e.g., medicines, diapers, catheters) and the subjectivities of care (e.g., physical and emotional health of carers). Subjective costs, I argue, are hidden costs, tied to the marketplace and emotional work of care. These are the costs to the personhood of carers and the people with dementia: those secret tallies that either render identity ambiguous and uncertain, or reinforce existing notions of identity.

    Commoditizing care, whether within the home or...

    (pp. 116-136)

    Begin by combining many ingredients – memory and nostalgia (Appadurai 1988, 1996), kinship (Manderson 1986), relationality and pleasure (Mintz 1985), domestic citizenship (Das and Addlakha 2001) and the sensory experiences of ingestion, excretion and its management (Jackson 1989). Mix these ingredients in the body, making sure its orifices and pores are open to inclement weather: fingers should smart from crushing too much chilli into a bubbling vindaloo, the head should be numbed from drinking ice water on a 45 degree afternoon when the sweat trickles down knees and the mouth should pool with saliva when the sourness of pickled mango seeds...

    (pp. 137-156)

    There is confusion about whether people living with dementia and their families experience stigma. Families and doctors often said that there was no stigma against dementia, while ARDSI would insist that stigma affected relationships in the home and families’ relations with the world at large. Although it might be argued that ARDSI had a vested interest in claiming stigma existed – to garner more funds to raise awareness of their organization – this does not present the complete picture. Many within ARDSI worried about the existence of stigma and these anxieties reflect the complex picture that emerges when stigma is...

    (pp. 157-182)

    Ḵẖāmosh, the Hindi word for ‘silence’, resounds in all its dramatic intensity throughout Bollywood cinematic conflict and symbolizes the power and voice of the speaker to command silence from his/her detractors. ‘Ḵẖāmosh!’ is often cried in multiple conflict settings, from ageing thakurs and land grabs, to angry daughters who battle against conservative fathers. The words flowing on fromḴẖāmosh! are heavy in their portent, heralding the detractors’ fates until such time as God, true love, revenge or other forces intercede. The word and its context are critical ingredients in the melodrama of Bollywood films. They signal moral conflict, the battle...

  14. CONCLUSION. ‘This is the Time for Romance’
    (pp. 183-191)

    When I was growing up in Delhi, typically schoolboys and girls would exchange a few misty cards and college students would grow flirtatious over their Pepsis®on Valentine’s Day. By 2008, things had changed significantly and Cupid’s arrow had struck the psyche of all classes. In the morning my maid wished me a happy Valentine’s Day, a friend text messaged felicitations for ‘a beautiful and romantic day’ and more messages followed from various companies encouraging me to buy their products to find true love. A typical message read: ‘WILL U MEET UR VALENTINE. Get valentine day forecast from Expert astrologer....

    (pp. 192-193)
    (pp. 194-216)
  17. INDEX
    (pp. 217-227)