Psychosocial Correlates and Perceived Needs of Family Caregivers of Persons Living with Dementia in India.

Abstract

AbstractBackgroundIn India, caregivers of persons living with dementia (CGPwD) often have limited access to dementia care resources. The aim of the study is to understand and deliver psychosocial interventions based on the perceived needs of the CGPwD in accordance with their socio‐cultural background and clinical characteristics of the persons with Dementia (PwD).MethodA sample of 32 CGPwDs attending a Dementia clinic at the NIMHANS, India, between July 2021 – October 2021 was chosen purposively. Cross‐sectional in‐depth interviews were carried out along with Zarit Burden Interview, (Zarit et al., 1980) and Hindi Mental Status Examination (Ganguli et al., 1995).ResultThe mean age of the CGPwD was 42.5 ± 8.5 years with MMSE score 9±7 indicating moderate to severe dementia. Those caregivers who spent more than 6 hours per day towards day‐to‐day caregiving brought out need for information about the illness seeking clarity about mental health care, support in Activities of daily living (ADLs), managing behavioural and psychological symptoms of Dementia (BPSD) and sharing of caregiver responsibilities, whilst those caregivers who took health related decisions for the PwD where concerned about problems associated with instrumental activities of daily living (iADLs), availability and affordability of caregiving resources such as day care, assisted living options, welfare services. Further results will be presented.Conclusion: The perceived needs of CGPwD vary based on severity of illness, socio‐economic status of the CGPwD, age of onset of illness, social support network, relationship between the caregiver and person living with Dementia, spiritual values, readiness to participate in support programs, and much more. Though mental health professionals can develop broader themes for intervention, individualised interventions may warrant poor rates of attrition.