1. Dr Karan Jutlla University of Worcester k.jutlla@worc.ac.uk
A qualitative study of the experiences of Sikh carers of people with dementia in Wolverhampton, UK The need for a person-centred approach to care
Dr Karan Jutlla
University of Worcester
Dawn Brooker Oxford Dementia Centre

2. Dementia in South Asian communities
Well reported (Seabrooke & Milne 2004; Jutlla & Moreland 2007; Moriarty et al 2011):
Dementia in South Asian Communities:
Lack of awareness and understanding of dementia
No equivalent word
High degree of stigma attached to mental health
Caring for someone who has dementia:
Disadvantaged as service users
Language and cultural barriers
Reluctant to ask for/or accept support from services
Hidden problem

3. Dementia in South Asian communities cont...
Reiterated findings about what the barriers are
Less understanding about why these barriers exist
Further research
How are they managing?

4. Location: communities & services
Dementia in minority ethnic communities
Personal histories
Location: communities & services
Experiences of migration
©Copyright Karan Jutlla

5. Wolverhampton (2001 Census)
Religion
Population
Total
236, 582
Christian
157,300
No religion
26,928
Religion not stated
19,804
Sikh
17,944
Hindu
9,196
Muslim
4,060
Buddhist
741
Jewish
104
Other religion
509

6. 3 Snapshots
Being a migrant: challenges myths that male carers struggle with role reversal
Being a Sikh: pressure to conform to cultural norms
Being a carer: evaluating services for the person with dementia

7. Being a migrant: Boota Singh, aged 87 years, cares for his wife
‘I worked there [in Singapore] for five years. I got a job as head cook... people worked underneath me [4s pause]. Because of that we are still alive. If I didn’t know how to do all these things... we would have died of starvation by now . I learnt over there. I’ve got full knowledge about food and cooking...[...]... Even when I first came here to Wolverhampton I was on my own. She [wife] came afterwards. We [the men] had to cook for each other, do our own cleaning and washing.. So it’s nothing new. I did it then, I do it now... It’s just that now my health is not as good.’

8. ©Copyright Karan Jutlla
Being a Sikh
Lack of informal support from within the Sikh community in Wolverhampton
No concept of the caring role
Pressure and expectations to conform to the duties associated with their relational role to the cared-for person
Wider discourses: Cultural norms about gendered roles and positions in the family
Such pressures can lead to carers not making use of services
For the majority of participants, caring for a person with dementia is largely seen as an extension of their relational role to the cared-for person, which reflects the situations of many carers caring for a family member with dementia (O’Connor 2007). My analysis suggests that such perceptions are strongly influenced by the Sikh community in Wolverhampton who, as a result of migration, have strengthened traditional cultural norms about gendered roles and divisions of labour in the family. Moreover, because there is no concept of a separate caring role in the Sikh community, there is an added pressure for Sikh carers to associate their caring responsibilities with that of their relational role to the cared-for person. Because the Sikh community create additional pressures for carers to have to cope with their situations, participants became even more ambivalent about cultural norms in the Sikh community (section 8.1.3). Drawing out the experiences of the Sikh community in Wolverhampton indicates the importance of locality when researching migrant communities.
Participants’ quests for assistance and support with caring were not just within the context of the family, but also the wider Sikh community of which they are a part of. Being part of the Sikh community in Wolverhampton therefore, is important to their experiences of caring for a person with dementia.
©Copyright Karan Jutlla

9. Ram Piari, aged 44 years, cares for her father-in-law

10. ‘With us as being Indians or Asians
‘With us as being Indians or Asians... it’s like the besthi (shame) if you turn around and say that I can’t cope with looking after this person anymore... if we turned around and it got to the stage where dad needed feeding... washing...medication and bedpans... and whatever else... I don’t think my husband could do it and to tell you the truth... I don’t know if I can do it. So it would mean putting him in a home...And it would be the besthi (shame) of that. People would actually point their finger and say look, look what so and so’s son did... threw him out the house... and I think that is a community attitude... whereas ... I’m not saying that it doesn’t happen in the White population... I’m sure things like that would happen... but... people are more objective ... they would turn around and say well actually yeah perhaps it was too much responsibility for that one son or daughter-in-law to look after them and probably he’s getting better treatment now than he would have been at home... but our community just really pressurises us... and it does make me angry you know...

11. Ram Piari cont...
....[5 second pause] but then, stepping aside from what the (Sikh) community has to say about it, when I think about having to put dad into a home... And that time may well come... I think well... How will he cope in a home when they are mainly set up for White people? His needs are different... The foods he eats, the way he does things.. His language and all that. So I guess it’s a no win situation really.’
As is evident in the case of Ram Piari - the expectations and pressures to adhere to roles and positions in the family affected participants use of services.
There are other examples

12. Being a carer: Darshan Kaur, aged 49 years, cares for her mother
‘All the sisters were putting in their little bit so that she [mom] can stay in this fantastic home… and there were actually…I think about four, maybe even five carers or nurses whatever... staff... that were Punjabi. But, that was another thing because if...when mom knew this is a lady called... I don’t know... Usha or Parveen or something that she knows that’s not Sikh, that’s Hindu or Muslim...or in the conversation it would come out... then that would be another thing that she didn’t sort of... it’s almost like...if it’s completely ‘Goreh’ [White people] you know it’s one thing, but it’s… it does play on their mind doesn’t it? Peoples religion and caste. It’s that generation I think. She’s not horrible about it, she wouldn’t ... I wouldn’t think she’d...well I’ve never heard her say anything, like insult anybody but ... it’s still there...so having Asian staff is not the answer.’
©Copyright Karan Jutlla

13. Being a Carer: Swaran Kaur, aged 79 years, cares for her husband
‘I took him out of day care. He is a baptised Sikh and we are very strict with our diet. There are even certain biscuits that we cannot eat. Yes there were Asian staff there... Some Sikh too... But that doesn’t mean that they won’t accidentally give him a biscuit with his tea... And he’d happily eat it because he doesn’t know he can’t.’

14. What this demonstrates...
Diversity within Asian communities
Diversity within the Sikh Community
How do we manage this and deliver culturally competent care?
©Copyright Karan Jutlla

15. A person-centred approach
Importance of understanding personal histories
Understanding cultural norms and discourses help us to understand where people are coming from... Helps us to understand why
People’s interpretations of those norms are dependent upon their own life experiences
One size does not fit all
©Copyright Karan Jutlla

16. Location: communities & services
Dementia in minority ethnic communities
Personal histories
Location: communities & services
Experiences of migration
©Copyright Karan Jutlla

17. The most important question...
What’s being done about it?
©Copyright Karan Jutlla

18. Association for Dementia Studies
Education & Training across Health and Social Care - Cultural Competencies: A person-centred approach
Higher education: optional module
Developing resources: The Dementia Ambassador’s Project
Creative therapies
Teaching resources: a short film
Further research:
Spirituality and Sikhs study
Conceptual framework as a methodological tool
Talk through each of these
©Copyright Karan Jutlla

19. Thank you Dr Karan Jutlla University of Worcester
Association for Dementia Studies
(Bottom row) Photographs of people living with dementia taking part in
The Enriched Opportunities Programme
University of Worcester Association for Dementia Studies