“It’s so strange”: South Asian Carers’ views of various places of care for their relative with Dementia Divya Chadha Doctoral Researcher University of Birmingham

Why is this interesting? South Asian (SA) carers were unaware of various places of care/services suitable for their relative with dementia South Asian (SA) carers were unaware of various places of care/services suitable for their relative with dementia Help was wanted but declined when offered Help was wanted but declined when offered Understanding of what makes SA carers access/not access services for their relative with dementia Understanding of what makes SA carers access/not access services for their relative with dementia

Background Research The ageing SA population Increase of dementia prevalence The ageing SA population Increase of dementia prevalence Policy context= Dementia UK Report (2007) National Dementia Strategy (2009) Policy context= Dementia UK Report (2007) National Dementia Strategy (2009) Dementia service uptake amongst the SA community is poor Dementia service uptake amongst the SA community is poor No research looking at SA carers views on the various types of care places No research looking at SA carers views on the various types of care places

Method Qualitative analysis most suited Qualitative analysis most suited IPA not chosen as research not centered around personal experiences IPA not chosen as research not centered around personal experiences Grounded Theory seen as an appropriate method Grounded Theory seen as an appropriate method Best method to answer the question Best method to answer the question Iterative + allows theory generation Iterative + allows theory generation

Method Kathy Charmaz’s Constructivist version of Grounded Theory Kathy Charmaz’s Constructivist version of Grounded Theory Best fit with researcher’s epistemological position Best fit with researcher’s epistemological position 10 interviews completed + transcribed 10 interviews completed + transcribed Interviews completed with “decision makers” rather than hands-on carers of the person with dementia Interviews completed with “decision makers” rather than hands-on carers of the person with dementia

PARTICIPANTS Interview 1 Daughter Interview 2 Son Interview 3 Daughter-in-Law Interview 4 Wife Interview 5 Husband Interview 6 Daughter-in-law Interview 7 Daughter Interview 8 Husband Interview 9 Son Interview 10 Son

Preliminary Analysis The concept of “strange” The concept of “strange” “ It’s a strange environment, with strange people and strange rules of living” “Why would I want strangers in my house touching my mum?” “It’s just so strange” “Every little thing which is important to him is different and strange in the day centre”

Preliminary Analysis “It’s all about the bonding” “It’s all about the bonding” “I have this feeling of…not duty or anything but a sense of feeling too close to mum to consider those options” “the greater the sense of attachment, lesser the chances at looking at extra support” “I feel I am attached to him, receiving the extra support makes me feel I am cutting off this attachment”

Preliminary Analysis “Comparisons with home” “Comparisons with home” “No NHS or care facilities exist back in India-why do we expect it here?” “Back home its all about keeping the loved one in the community- no old age homes for us!” “Why is there such an emphasis in providing such detailed care services here- it’s like a luxury here compared to Pakistan”

Discussion Difference in opinion amongst different “decision makers” Difference in opinion amongst different “decision makers” Effect of acculturation Effect of acculturation Problems in identifying the “decision makers” within the family system Problems in identifying the “decision makers” within the family system

Future Research What are the factors which predict access to health services amongst SA carers for their relative with dementia What are the factors which predict access to health services amongst SA carers for their relative with dementia What services would the SA carers prefer for their relative with dementia? What services would the SA carers prefer for their relative with dementia?

Thank you for your time Divya Chadha 516 School of Psychology University of Birmingham B15 2TT Tel: