From early detection to end-of-life care: a qualitative exploration of the South Asian family carers’ experiences of the journey with dementia

Problem

People of South Asian origin have a greater risk of developing dementia compared with the United Kingdom (UK) population as a whole. Despite this, little is known about how members of this population perceive dementia, how family carers access dementia services and how they plan and prepare for the end-of-life of their loved ones with dementia.

Approach

This qualitative study aimed to explore the experiences of family carers of people with dementia of South Asian origin in the UK, with particular focus on the experiences of the person with dementia and their families throughout the dementia journey, from the time around a diagnosis of dementia to end-of-life care. Recruitment was through community and religious groups in the West Midlands. Thematic analysis with constant comparison was conducted. NVivo was used to manage the data. University ethics approval obtained. Patient and Public involvement contributed to all stages of the study.

Findings

Sixteen family carers participated in face-to-face, semi-structured interviews (one interview included two carers).

Four key themes will be presented i) awareness that there is a problem; ii) dealing with the problem; iii) preparing for end-of-life iv) barriers to accessing end-of-life care services. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed among their relatives with dementia. There was a perceived lack of cultural and religious understanding regarding intimate care from paid-carers including washing, bathing and clothing. Family carers described the difficulties they encountered in trying to meet the expressed wishes and preferences of their loved ones around end-of-life care and burial rituals. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia.

Consequences

This is the first study to report perspectives of South Asian family carers of people with dementia to explore the end-of-life care and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including preparation for end-of-life care. This study suggests that planning and preparing to provide end-of-life care for people with dementia should recognise and respect family and cultural contexts and religious beliefs.