A qualitative investigation into the understandings and experiences of familial Asian Indian carers of a person with Dementia post-diagnosis.

Abstract: Background: The Black, Asian and Minority Ethnic (BAME) populations have consistently been shown to access support for dementia later and less frequently than their White British counterparts in the UK. It is also known that Asian Indian carers are the largest ethnic minority group of family carers with many caring for a person with dementia (PwD). As such, familial Asian Indian carers are important in supporting the PwD. Whilst research has focussed on the difficult experiences of the BAME population prior to and during the dementia assessment process, little has explicitly focussed on post-diagnostic experiences, therefore these experiences will be the focus of this research. Aim: To understand the experiences of Asian Indian carers of a PwD post-diagnostically. Methods: Semi-structured interviews were conducted with five Asian Indian carers recruited from a London Dementia Service. An Interpretative Phenomenological Analysis (IPA) was conducted on the interview data. Results: Two superordinate themes ‘Difficulties with carer identity and role’ and ‘formal vs informal support’, emerged from the interview data each with subordinate themes. Conclusion: Post-diagnostically, these Asian Indian carers experienced difficulties in their changing identities and roles along with emotional difficulties when fulfilling the caring role. Carers used formal services (dementia service, GP and third sector organisations) to varying degrees. Importantly, carers were often proactive in their engagement with these services and often used their own resources (family, community, internet) in managing their needs. Keywords: Asian Indian, carer, familial, dementia, experiences