Caring for a person with dementia: a qualitative study of the experiences of the Sikh community in Wolverhampton (PhD Thesis).

Role: Lead researcher
Funded by Keele University, this PhD began in September 2006 and was completed by November 2011

Background

Though there was some research on the experiences of Asian carers of people with dementia, the research had not considered how their personal histories, including those of migration, may impact on their experiences of caring. With the core aim to better inform policy and practice, existing research on such groups had focused largely on their experiences as service-users. This doctoral study therefore aimed to identify how migration experiences and personal histories influence experiences of caring for a person with dementia for Sikhs living in Wolverhampton.

Design

Using a constructivist grounded theory, two in depth narrative interviews were carried out with 12 carers of a family member with dementia. The first interview focused on their experiences of caring and the second focused on their personal histories including their experiences of migration. Of the 12 participants, nine were women and three were men. Participants ranged between spousal carers and intergenerational carers, and had various migration histories and included those who were British born or British educated to migrant parents.

Results

Analysis highlighted the importance that migration experiences have on experiences of caring for a person with dementia. Participants’ different reasons for, and routes of, migration are important for understanding both their perceptions and experiences of caring for their family member with dementia. Analysis also revealed strong cultural norms about gendered roles and positions in Sikh families that too impact on their experiences of caring. The expectations (from within the family and the Sikh community in Wolverhampton) to conform to their roles and positions influenced participants use of informal and formal support to help them manage caring responsibilities.

Conclusions

The principle conclusion was that participants’ experiences of caring for a person with dementia are dependent upon their complex and continuous (re)positioning between the caring role and their relational role to the cared-for person.

A full copy of the thesis can be downloaded from https://ethos.bl.uk/Home.do;jsessionid=453BD2841B0C711EFE1EC63B9333D1A3

by searching ‘Karan Jutlla.’