Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

Abstract

PurposeMany individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.Design/methodology/approachThree focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.FindingsThe findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.Research limitations/implicationsThere is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.Practical implicationsThe findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.Originality/valueThis paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.