© The Association for Dementia Studies Promoting cultural competency in dementia care: A person-centred approach Dr Karan Jutlla Senior Lecturer Association

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The Association for Dementia Studies Promoting cultural competency in dementia care: A person-centred approach Dr Karan Jutlla Senior Lecturer Association for Dementia Studies, University of Worcester Slide 2 The Association for Dementia Studies BAME Communities In the UK the term Black, Asian and Minority Ethnic (BAME) communities is used to describe a group of people that share a similar experience and face particular challenges in getting the support they need (APPG 2013: 20). Slide 3 The Association for Dementia Studies Dementia does not discriminate Current estimate of nearly 25,000 people with dementia from BAME communities in England and Wales. This number is expected to grow to nearly 50,000 by 2026 and over 172,000 people by 2051. This is nearly a seven-fold increase in 40 years. It compares to just over a two-fold increase in the numbers of people with dementia across the whole UK population in the same time period. BAME communities are not just getting older but they are also growing in numbers (APPG 2013) Slide 4 The Association for Dementia Studies Service Eastern European AsianIrish Slide 5 The Association for Dementia Studies Outcomes By the end of this webinar you will: Understand the core principles of person-centred dementia care Consider how this represents the guiding principles for achieving cultural competency Recognise some of the challenges for people with dementia and their carers/family members from BAME communities Slide 6 The Association for Dementia Studies Person Centred Dementia Care Professor Tom Kitwood 6 Slide 7 The Association for Dementia Studies The Enriched Model of Dementia Care The Enriched model recognises the multiplicity of factors which affect a persons experience of dementia including neurological impairment, physical health, the individuals biography and personality, and the social environment in which they live. Kitwood (1997) Slide 8 The Association for Dementia Studies D=NI + H + B + P + SP By understanding NI, B & P and optimising H & SP we can help people live well with dementia NI Neurological Impairment H Health B Biography - life history P Personality SP Social Psychology Slide 9 The Association for Dementia Studies Person centred care & Personhood . Person Centred Care are the processes by which service providers maintain the Personhood of those who receive their services.. Personhood is a standing or status that is bestowed on one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.. Kitwood, Dementia Reconsidered 1997 Slide 10 The Association for Dementia Studies Person centred care fit for VIPS Slide 11 The Association for Dementia Studies Person Centred Care for BAME communities Represents the guiding principles for what it means to be culturally competent. Slide 12 The Association for Dementia Studies Cultural competency Culture refers to integrated patterns of human behaviour that include the language, thoughts, actions, customs, beliefs and institutions of racial, ethnic, social or religious groups. Competence implies having the capacity to function effectively as an individual or an organisation within the context of the cultural beliefs, practices and needs presented by people and their communities (Cross et al. 1989; Lee and Farrell 2006). Slide 13 The Association for Dementia Studies Cultural competency cont For Gallegos et al. (2008:54) cultural competence refers to the process by which individuals and systems respond respectfully and effectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner that recognises, affirms, and values the worth of individuals, families, and communities and protects and preserves the dignity of each. Slide 14 The Association for Dementia Studies Cultural competency cont Involves more than having an awareness of cultural norms. It is an approach that values diversity and promotes inclusivity It represents a value-based perspective that recognises individuality (Gallegos et al. 2008). Slide 15 The Association for Dementia Studies Person-centred care with BAME communities social and political influences In order to achieve mutually satisfying user/provider relationships such people should be regarded as individuals alongside knowledge of the social and political influences on their lives rather than regarding them as members of other groups (Mackenzie 2007:76). Promoting inclusivity in existing services Slide 16 The Association for Dementia Studies BAME communities International Community: Migration National Community Local Community Family Person Slide 17 The Association for Dementia Studies Social Influences Culture and community norms Stigma of mental health Reluctance to ask for, and accept, formal support Familial roles and a duty to care Need to portray an image of well being to those outside of the family (Jutlla 2011; Moriarty et al. 2011; Jutlla & Moreland 2007; Seabrook and Milne 2004) Slide 18 The Association for Dementia Studies Sikhs caring for a family member with dementia in Wolverhampton Roles and positions in the family: Cultural norms Expectations Pressures Sikh community: no concept of a separate carer role Such pressures can lead to carers not making use of services Slide 19 The Association for Dementia Studies Ram Piari, aged 44 years, cares for her father-in-law With us as being Indians or Asians... its like the besthi (shame) if you turn around and say that I cant 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 dont think my husband could do it and to tell you the truth... I dont 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 sos son did.. threw him out the house.. and I think that is a community attitude... whereas... Im not saying that it doesnt happen in the White population... Im 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 hes getting better treatment now than he would have been at home... but our community just really pressurises us Slide 20 The Association for Dementia Studies Pilot study participant, aged 33 years, cares for her father I really struggled at the beginning... Mainly because I wouldnt send dad to day care. I was scared of what the (Sikh) community would say about me for sending him... That I wasnt a good daughter... And that I couldnt look after him properly. But the CPN encouraged me to do it and although it really helps me because I work as well, I still feel that they are pointing fingers at me. Its horrible really... I feel like an outcast. Slide 21 The Association for Dementia Studies Simarjeet Kaur, aged 49 years, cares for her mother When informed of her financial entitlements, she stated: I've never asked because they'll start saying... she's taking money for her mom. It's very expensive, they (Asians) don't realise it's hard to get by. The stigma that would be attached to her therefore resulted in her initial refusal of financial entitlements Slide 22 The Association for Dementia Studies However. Simarjeet further states that Sometimes I feel like the Government does differences when it comes to our people. I dont know like...it is them or it is us? Perhaps we dont know how to ask for help...honestly. But then, if you dont know whats available, how are you going to ask? The CPN told me and I said, no-one told us about that. Its supposed to be the doctors duty isnt it, to tell you? So many things that would help to make it easier to care for mom. Slide 23 The Association for Dementia Studies What this means Quite often such situations can lead to feelings of loneliness, isolation and sometimes even depression. A huge need for both informal and formal support (emotional and practical) Slide 24 The Association for Dementia Studies Experiences of formal support Cultural awareness issues Religious requirements associated with being a baptised Sikh Diet Ethnic identity matching Having Asian staff is not the answer (Darshan Kaur). Slide 25 The Association for Dementia Studies Ethnic identity & cultural diversity Whilst there are similarities across different ethnic communities, there are also differences both within and across communities based on: Religion Migration experiences Language Caste Slide 26 The Association for Dementia Studies The Caste System Castes within the Sikh population in rural Punjab fit into a hierarchy comprising four broad categories. Similar across other South Asian communities (Ballard and Ballard 1979; Kalra 1980): 1.Brahmins and Khatris - high rank priestly class who traditionally acted as warriors to the Gurus. They comprise approximately ten per cent of the rural population of the Punjab. 2.Jats - the landowners and farmers and comprise approximately 50 per cent of the rural population of the Punjab. 3.Craftsmen and service caste - comprise approximately 15 per cent of the rural population, of whom the Ramgarhias (carpenters) are the largest group. 4.The untouchables - comprise approximately 25 per cent. Slide 27 The Association for Dementia Studies Cultural Diversity Illustration PunjabEast Africa Caste 1Sikhs Muslims Hindus Sikhs Muslims Hindus 2Sikhs Muslims Hindus Sikhs Muslims Hindus 3Sikhs Muslims Hindus Sikhs Muslims Hindus 4Sikhs Muslims Hindus Sikhs Muslims Hindus e.g. Shared language e.g. Shared social norms Slide 28 The Association for Dementia Studies Political Influences Life history Understanding migration experiences and what these mea