Caregiving Burden in Minority Ethnic Family Caregivers of People with Dementia

Background: The number of family caregivers of people with dementia from minority ethnic backgrounds is expected to increase substantially, owing to the projected increase in dementia diagnoses within these communities. Considerable research suggests higher levels of burden among minority ethnic caregivers; however, there is limited research exploring caregivers’ perception of implicating factors. Aim: To explore minority ethnic family caregivers’ perception of factors associated with burden, when caring for a person with dementia. Method: Semi-structured interviews were conducted with six minority ethnic family caregivers of people with dementia. Data was analysed using reflexive thematic analysis (Braun & Clarke, 2021). Findings: Four overactive themes were identified: 1) systemic inequalities and discrimination; 2) failure to share knowledge; 3) family structures and expectations; 4) personal sacrifices. Conclusion: Caregiver burden was perceived to be associated with racism, discrimination and cultural incompetence within services; lack of information sharing at diagnosis and lack of prior knowledge about dementia; sacrificing own needs to prioritise caregiving responsibilities. Implication for clinical practice include development of culturally and linguistically competent services and healthcare professionals, targeted interventions, dementia education and information sharing. Future research should consider intra-ethnic and inter-ethnic differences in predicting caregiving burden.<p></p>