Understanding Experiences and Challenges of the ‘Ageing’ Informal Caregiver of Persons with Dementia

Caregiver strain in dementia care has been widely studied in the context of adult children as caregivers. Most of the research has been on the stress experienced by caregivers, on several dimensions, i.e. physiological distress, emotional and financial strains and a lack of support system. However, the impact of stress endured by older caregivers, including spousal caregiving, has not been studied in depth within the Indian context. This study seeks to understand the phenomenon of caregiving strain experienced by older caregivers either in the capacity of son/daughter or spouse. Semi-structured interview guide was used to collect data from 10 older caregivers, who were recruited through convenient sampling. The results indicate financial constraints post-retirement affecting older caregivers’ ability to cover direct medical and non-medical costs of caregiving. Emotional strain due to lack of dementia-related knowledge and lack of awareness on communication and engagement with persons living with dementia was reported as leading to negative caregiver-care recipient relationships. Relational deprivation, interpersonal loss and grief have been observed to negatively impact older (mostly spousal) caregivers in the course of caregiving. This study identifies critical psycho-social interventions and policy based recommendations which need to be explicitly addressed to meet the specific needs of the ageing caregiver population.