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South Asian women and caring for a family member with dementia: some reflections from the Sikh community in Wolverhampton

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Karan JutllaThe Alzheimer's Society tells us that two thirds of the people living with dementia in the UK are women and many research papers state that most family carers and those paid to care for people with dementia are also women. Furthermore, research on dementia in South Asian communities in the UK tells us that the majority of family carers are in fact daughters-in-law who tend to remain hidden from services due to their husbands usually being classed at the registered carer (the person known to services).

I was hoping that this trend had changed when I embarked on my doctoral research with Sikh carers of a family member with dementia in Wolverhampton in 2007. Completed in 2011, the findings were (unfortunately) supportive of this evidence as the research included four women who were unknown to services at the time of their interviews; two daughters in law whose husbands were the registered carer and two spousal carers whose sons were the registered carers. Though I can understand the good intention behind offspring acting as a registered carer for a parent who is not fluent in English, what were the reasons for the daughters-in-law not being known to services?

This was not a specific research question in my study but this JRF campaign along with a recent enquiry about the experiences of the women in my research has led me to return to the findings of my research to take a closer look at how experiences of being a daughter-in-law impacts on experiences of caring for a family member with dementia. A full account of how roles and positions in the family impact on experiences of caregiving can be found in my PhD thesis available online at: ethos.bl.uk/Home.do (Thesis title: Caring for a person with dementia: a qualitative study of the experiences of the Sikh community in Wolverhampton).

Indeed there are universal discourses about gender roles and divisions of labour that predispose women to naturally nurture and take care of the daily activities that happen within the home whilst traditionally men take care of matters outside of the home. Though research tells us that such norms are particularly prominent in South Asian communities, I believe (and I'm sure many will agree with me), that this is a universal concept.

However; that is not to say that the experiences of some South Asian women living in the UK are not any different from other women. They are different. Very different. Why? Because the cultural norms that operate within these communities in the UK do so within a metaphorical space. That is, they are derived from a time prior to migration, during the 1950-60s, and though such norms may have changed in their countries of origin, they continue to remain strong in migrant communities living in the UK – largely due to their need to maintain their cultural identities in a foreign land. Attached to some of those norms are discourses about roles and positions in the family and their associated responsibilities.

According to the women in my research, daughters-in-law are expected and pressured to conform to the responsibilities associated with their role. For many women, this position is one of subjugation – something they have been 'taught' to accept since childhood and has had significant health consequences for some.

Let's take a look at some examples.

Ram Piari is a 44 years old woman who cares for her father-in-law with dementia. She suggested that the cultural norms impressed on her throughout childhood meant that she remained in a subjugated position:

'I've been brought up with you respect your elders... you listen to them. So... if there were areas... I used to think well... okay... these are the people I've got to answer to now.' She commented that: 'even now, 21 years on... she [mother-in-law] really likes it if he [husband] has the upper hand on me... or if he shouts at me... she really enjoys it.'

Feeling powerless, entrapped and isolated has led to expressions of depression for some of these participants. Ram Piari, for instance, felt so subjugated by her role as a daughter-in-law that she even contemplated suicide. Other participants similarly reported mental health problems as a result of having to maintain such responsibilities whereby becoming a daughter-in-law brought with it an entirely new set of norms.

Similar to Ram Piari, Kareena also talked about the controlling nature of her mother-in-law. And how, because she had been raised to always listen to her elders, she never fought back. Kareena is 50 years old and cares for her father with dementia.

She said: 'They [in-laws] were very, very backward people.. Livin' the old way like Indians would be you know... I gotta cover my face... I can't wear this... I can't do this.... I can't do... you know... she would tell me all these [things]. My mother-in-law would even tell me what clothes I could wear... and what I can't wear. And how I could do my hair... and what I couldn't do to my hair... and what I could cook... you know when I was supposed to cook... and when not too. I tried livin' with them quite a bit... I tried so hard... But... you know... the way I understood it... cuz I listened to my mom and dad growin' up... you were just taught to listen and never answer back so I never did.'

Consequently, when talking about her experiences of having cancer, Kareena stated: 'it's because of everything my husband's family put me through when I got married... it was so stressful... I was only young... I felt like I was being bullied... their slave... all that stress it caught up with me.' Although Kareena knew that she was being mistreated she continued to attempt to salvage relationships and conform to her role as a daughter-in-law. This internal understanding did not change when a family member developed dementia and became in need of care.

In addition to that, the lack of knowledge and understanding about dementia and the role of a carer from family members and local Sikh acquaintances meant that there was no support from within the Sikh community for these women – causing them to further feel ambivalent about such cultural norms. This meant that not only were they dealing with the stressors of caring for a person with dementia, but they were doing so in silence.

The key message here is that services and healthcare care workers need to reach out to such women – especially when they are not the carer known officially to services.

It is also important to acknowledge that not all women experienced this. Some had very high levels are carer satisfaction feeling incredibly proud that they have been able to fulfil their duty positively and effectively carry out the tasks for caring for their family member with dementia. We must not forget that each person's experience is unique – as is the person's journey of dementia.

Dr Karan Jutlla, The Association for Dementia Studies, University of Worcester

Tags: BAME communities, carers, daugthers-in-law, family Written 2014-11-13

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