““It’s so strange”: South Asian It’s so strange”: South Asian Carers’ views of various places Carers’ views of various places of care for their relative with of care for their relative with

DementiaDementia

Divya ChadhaDivya Chadha

Doctoral ResearcherDoctoral Researcher

University of BirminghamUniversity of Birmingham

Why is this interesting?Why is this interesting?

• South Asian (SA) carers were South Asian (SA) carers were unaware of various places of unaware of various places of care/services suitable for their care/services suitable for their relative with dementiarelative with dementia

• Help was wanted but declined when Help was wanted but declined when offeredoffered

• Understanding of what makes SA Understanding of what makes SA carers access/not access services for carers access/not access services for their relative with dementiatheir relative with dementia

Background ResearchBackground Research

• The ageing SA population Increase The ageing SA population Increase of dementia prevalenceof dementia prevalence

• Policy context= Dementia UK Report Policy context= Dementia UK Report (2007) National Dementia Strategy (2007) National Dementia Strategy (2009)(2009)

• Dementia service uptake amongst the Dementia service uptake amongst the SA community is poorSA community is poor

• No research looking at SA carers views No research looking at SA carers views on the various types of care placeson the various types of care places

MethodMethod

• Qualitative analysis most suitedQualitative analysis most suited

• IPA not chosen as research not IPA not chosen as research not centered around personal experiencescentered around personal experiences

• Grounded Theory seen as an Grounded Theory seen as an appropriate method appropriate method

• Best method to answer the questionBest method to answer the question

• Iterative + allows theory generationIterative + allows theory generation

MethodMethod

• Kathy Charmaz’s Constructivist Kathy Charmaz’s Constructivist version of Grounded Theory version of Grounded Theory

• Best fit with researcher’s Best fit with researcher’s epistemological positionepistemological position

• 10 interviews completed + 10 interviews completed + transcribedtranscribed

• Interviews completed with “decision Interviews completed with “decision makers” rather than hands-on carers makers” rather than hands-on carers of the person with dementiaof the person with dementia

PARTICIPANTSPARTICIPANTSInterview 1Interview 1 DaughterDaughter

Interview 2Interview 2 SonSon

Interview 3Interview 3 Daughter-in-LawDaughter-in-Law

Interview 4Interview 4 WifeWife

Interview 5Interview 5 HusbandHusband

Interview 6Interview 6 Daughter-in-lawDaughter-in-law

Interview 7Interview 7 DaughterDaughter

Interview 8Interview 8 HusbandHusband

Interview 9 Interview 9 SonSon

Interview 10Interview 10 SonSon

Preliminary Analysis Preliminary Analysis

• The concept of “strange”The concept of “strange”“ “ It’s a strange environment, with strange It’s a strange environment, with strange

people and strange rules of living”people and strange rules of living”““Why would I want strangers in my house Why would I want strangers in my house

touching my mum?”touching my mum?”““It’s just so strange”It’s just so strange”““Every little thing which is important to Every little thing which is important to

him is different and strange in the day him is different and strange in the day centre”centre”

Preliminary AnalysisPreliminary Analysis

• ““It’s all about the bonding”It’s all about the bonding”““I have this feeling of…not duty or anything I have this feeling of…not duty or anything

but a sense of feeling too close to mum to but a sense of feeling too close to mum to consider those options”consider those options”

““the greater the sense of attachment, lesser the greater the sense of attachment, lesser the chances at looking at extra support”the chances at looking at extra support”

““I feel I am attached to him, receiving the I feel I am attached to him, receiving the extra support makes me feel I am cutting extra support makes me feel I am cutting off this attachment”off this attachment”

Preliminary AnalysisPreliminary Analysis

• ““Comparisons with home”Comparisons with home”

““No NHS or care facilities exist back in India-No NHS or care facilities exist back in India-why do we expect it here?”why do we expect it here?”

““Back home its all about keeping the loved Back home its all about keeping the loved one in the community- no old age homes one in the community- no old age homes for us!”for us!”

““Why is there such an emphasis in providing Why is there such an emphasis in providing such detailed care services here- it’s like a such detailed care services here- it’s like a luxury here compared to Pakistan”luxury here compared to Pakistan”

DiscussionDiscussion

• Difference in opinion amongst Difference in opinion amongst different “decision makers”different “decision makers”

• Effect of acculturationEffect of acculturation

• Problems in identifying the “decision Problems in identifying the “decision makers” within the family systemmakers” within the family system

Future ResearchFuture Research

• What are the factors which predict What are the factors which predict access to health services amongst SA access to health services amongst SA carers for their relative with carers for their relative with dementiadementia

• What services would the SA carers What services would the SA carers prefer for their relative with prefer for their relative with dementia?dementia?

Thank you for your timeThank you for your time

Divya ChadhaDivya Chadha516 School of Psychology516 School of PsychologyUniversity of BirminghamUniversity of Birmingham

B15 2TTB15 2TTTel: 01213012068Tel: 01213012068

Email: divya.chadha@bsmhft.nhs.ukEmail: divya.chadha@bsmhft.nhs.uk