The impact associated with caring for a person with dementia: a report from the 10/66 Dementia Research Group's Indian network

In most developing countries health services are not orientated to the needs of older people, and welfare provision is rudimentary (The 10/66 Research Group, 2000; Shaji et al., 2002). Care has been considered to be the responsibility of families, however, the integrity of this traditional arrangement is increasingly threatened by rapid socio-cultural and economic change (Patel and Prince, 2001). Findings from the 10/66 Dementia Research Group’s international pilot studies on care for people with dementia are presented elsewhere in this issue (The 10/66 Research Group, 2003). In two Indian centres; Goa (rural/semi-urban) and Chennai (urban); we sought to clarify the impact of dementia on caregivers (30 in each centre) by comparing their economic and psychological status and perceived strain with those of co-residents of older persons from the control groups free of dementia (60 in each centre), and of caregivers and co-residents of older persons with moderately severe depression (30 in each centre). The use of health services by the older people, and associated costs were also compared. In Goa, dementia and depression cases were suggested by community key informants prompted by vignettes. In Chennai, cases were recruited from a hospital outpatient department. In both centres dementia diagnoses (DSM-IV criteria/Clinical Dementia Rating mild or moderate) were confirmed by clinical examination. None of the participants in Goa and only one in Chennai had received a diagnosis of dementia prior to the study. Depression was confirmed by a score of above 18 on the Montgomery Asberg Depression Rating Scale. Caregiver mental health was assessed using the General Health Questionnaire (GHQ-12), scores of 3 and over indicating likely mental disorder, caregiver strain with the Zarit Burden Interview. The Client Service Receipt Inventory assessed health care costs covering use of private, public hospital and primary health care. Further information is provided in the companion paper (ref). The instruments were translated and back translated into the local languages of Konkani and Tamil. Caregivers of people with dementia spent significantly longer providing care than did caregivers and co-residents of depressed person and controls (Table 1). The highest proportion of time was spent communicating, supervising, and helping with eating and toileting. Caregiver strain was notably higher among caregivers of people with dementia. They were 16 times more likely to have a common mental disorder than co-residents of controls and twice as likely as co-residents of people with depression. Economic strain was indicated by the high proportion of dementia caregivers giving up work to care, coupled with the increased likelihood of high health care costs. This was explained by the propensity for people with dementia to use expensive private medicine rather than free government services.