Exploring the experiences of Indian Gujarati people in the London area supporting a person with dementia

Dementia care-giving is often constructed as burdensome and stressful. However, there is a growing interest to explore what the positive aspects of care-giving might be. Furthermore, there is little research which has focussed on the experiences of dementia care-giving in minority ethnic groups. Existing research mostly homogenises different ethnic groups, particularly different South Asian communities. It is argued that little is known about the care-giving experiences of specific South Asian subgroups but early research suggests variations in care-giving exists between them. The aim of the present study was to gain an insight into how some British Indian Gujaratis, a specific South Asian cultural linguistic group, felt about supporting a family member with dementia, particularly what care-giving meant to them, what were the positive and negative aspects of care-giving and what helped them to cope.
The present study adopted a qualitative methodology using semi-structured interviews. Ten participants’ accounts were analysed using Interpretative Phenomenological Analysis. Four main themes emerged capturing the impact of dementia care-giving for caregivers at an intrapsychic, dyadic, family and community and culture level. Each theme had a number of subordinate themes. Consistent with previous findings were the themes of psychological impact, growth and development, loss of relationship, reciprocity and family support. The study highlighted new themes at a community and culture level around expectations and norms and knowing and talking about dementia. It also highlighted the role religion and spirituality might play in helping some to manage the negative impact of care-giving. The findings have both clinical and research implications which are highlighted.