10/66 Dementia Research Group Alzheimer's Disease International

Qualitative Studies

This 93 year old study participant in Chennai (urban India) continues to run his own store

Knowledge, attitudes and beliefs are best assessed through qualitative research studies. Three recent studies from India (two conducted by the 10/66 Dementia Research Group) have used a mixture of focus group discussion and open-ended interviews to investigate these issues. They tended to agree regarding the extent of awareness in the different communities studied (Patel and Prince, 2001; Cohen, 1995; Shaji et al, 2002). First, the typical features of dementia are widely recognized, and indeed named 'Chinnan' (literally childishness) in Malyalam language in Kerala (Shaji et al, 2002b), 'nerva frakese' (tired brain) in Konkani language in Goa (Patel and Prince, 2001), and 'weak brain' in Hindi in Banares (Cohen, 1995). However, in none of these settings was there any awareness of dementia as an organic brain syndrome, or indeed as any kind of medical condition. Rather it was perceived as a normal, anticipated part of ageing. In Goa the likely causes were cited as 'neglect by family members, abuse, tension and lack of love'(Patel and Prince, 2001). In Kerala it was reported that most caregivers tended to misinterpret symptoms of the disease and to designate these as deliberate misbehavior by the person with dementia (Shaji et al, 2002).

This general lack of awareness has important consequences.

  1. there is no structured training on the recognition and management of dementia at any level of the health service.
  2. in the absence of understanding regarding its origins dementia is stigmatized, for example sufferers are specifically excluded from residential care, and often denied admission to hospital facilities (Patel and Prince, 2001).
  3. there is no constituency to place pressure on the government or policy makers to start to provide more responsive dementia care services (Shaji et al, 2002).
  4. while families are the main caregivers, they must do so with little or no support or understanding from other individuals or agencies.

Cohen (1995), on the evidence of his research in Banares, speaks of the 'outsider narrative' for dementia, that is the explanation of a neighbour, relative or passer by as 'that the old person receives inadequate respect or support from a particular child. Family members will be far more likely to speak of weak brain, when they speak of it at all as a natural phenomenon, as but old age. Certain kinds of behaviors of old persons, particularly yelling and wandering, are difficult to contain within household space and, when associated with accusations of mistreatment, ultimately require alternative explanations from family insiders against the outside narrative of the Bad Family.'

This construction is a counterpoint to the suggestion from Goa that dementia is associated with, indeed caused by family neglect. Behavioural symptoms of dementia; wandering, calling out, making accusations; may be taken by outsiders as prima facie evidence of neglect or abuse. Caregivers then face a double jeopardy, the strain of care heightened by the stigma and blame that attaches to them because of the disturbed behaviour of their relative (The 10/66 Dementia Research Group, 2004). This notion is supported by the responses of some caregivers in the 10/66 pilot studies to the question 'what do you find most difficult about looking after your relative?'

'Family members think we are the cause for his illness - they think we deserve all that is happening to us. Other than family, we don't really care'. Caregiver - Bangalore (India)

'She keeps wanting to go home. She feels cheated and deceived. She behaves like a child and greets me instead of me greeting her. She behaves embarrassingly. We continue locking the door every time. We feel ashamed; it is a useless life.' Caregiver - Anambra (Nigeria)

Such evidence argues powerfully for the benefits of broad dissemination of appropriately structured information about dementia (The 10/66 Dementia Research Group, 2004).

10/66 Publications

  1. Shaji KS, Smitha K, Lal KP, Prince MJ. Caregivers of people with Alzheimer's disease: A qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry. 18(1): 1-6, January 2003
  2. Patel V, Prince M. Ageing and mental health in a developing country: Who cares? Qualitative studies from Goa, India. Psychological Medicine. 31(1): 29-38, Jan 2001
  3. Prince M, Livingston G, Katona C. Mental health care for the elderly in low-income countries: a health systems approach. World Psychiatry 2007 Feb;6(1):5-13.
  4. The 10/66 Dementia Research Group. Behavioural and psychological symptoms of dementia in developing countries. International Psychogeriatrics. 16(4): 1-19, 2004

Other key publications

  1. Cohen, L. (1995) Toward an anthropology of senility: Anger, weakness, and Alzheimer's in Banaras, India. Med.Anthropol.Q. 9 (3): 314-34.

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