1. Promoting cultural competency in dementia care: A person-centred approach
Dr Karan Jutlla
Senior Lecturer
Association for Dementia Studies,
University of Worcester
Dawn Brooker Oxford Dementia Centre

2. The Association for Dementia Studies (ADS), University of Worcester, UK.
Founded in 2009 by Professor Dawn Brooker

3. Building Bridges between the stages of the cycle
Theory
Research
Practice
Better lives for people living with dementia

4. © The Association for Dementia Studies
ADS work in the UK
Education
Research
Knowledge transfer
© The Association for Dementia Studies

5. ADS work around the world
© The Association for Dementia Studies

6. Outcomes By the end of this presentation 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 from migrant communities living in the UK
Translate those findings into your own areas of work

7. Dementia is not about a single service intervention
Our health and social care services aim to support people and their families through targeted case detection, timely diagnosis, post diagnostic support and adjustment, progressive and unpredictable loss of functioning, adjusting to help at home, changing lifestyle needs, hospitalisations, housing support, care home admission and complex end of life issues.
All of this needs to be done with due respect and sensitivity to the person’s lifestyle, family context and the context of the community in which they live.
University of Worcester Association for Dementia Studies

8. 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).
Migrant communities, including those British born to migrant parents

9. 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
A culturally diverse UK

10. Across the globe Service Irish Asian Eastern European
What we need therefore are services who feel competent to meet the needs of people from different cultures and communities… and this is, of course, a global issue.

11. Addressing cultural diversity
The ethno-linguistic composition of the population of South Asia, that is the nations of India, Pakistan, Bangladesh, Nepal, Bhutan, Maldives and Sri Lanka is highly diverse
India alone has more than 2,000 ethnic groups with 1,652 languages spoken

12. South Asians in the UK
South Asians are the largest migrant community living in the UK
2001 Census: 2,331,423
2011 Census: 3,039,470 representing around 4.9% of the population:
2.3% Indian
1.9% Pakistani
0.75% Bangladeshi

13. Service Perspective: South Asian families in the UK
Fear of the ‘unknown’
Being ‘politically correct:’ ‘I’m sometimes frightened to ask in case I say the wrong thing’ (Care worker)
Assumptions about community support: ‘They look after their own don’t they?’
Reliance on family for information
Language is seen as the biggest barrier
Ethnic identity matching
From a service perspective there is the fear of the ‘unknown.’ People wanting to be politically correct as one of my cultural competency course participants stated during a teaching session - ‘I’m sometimes frightened to ask in case I say the wrong thing’ (Care worker). This is a very common feeling for many health care professionals and care workers. There are also assumptions about community support as I touched on earlier, in addition to a huge reliance on family for information with language seen as the biggest barrier.

14. Person Centred Dementia Care
Professor Tom Kitwood
Founded by Professor Tom Kitwood, the concept of person-centred dementia care involves more than identifying and meeting individual needs.

15. The Enriched Model of Dementia Care
The Enriched model recognises the multiplicity of factors which affect a person’s experience of dementia including neurological impairment, physical health, the individual’s biography and personality, and the social environment in which they live.
Kitwood (1997)
As emphasised by his Enriched Model of Dementia Care, Kitwood (1997) recognised the multiplicity of factors which affect a person’s experience of dementia including their neurological impairment, their physical health, the individual’s biography and personality, and the social environment in which they live.

16. Person centred care fit for VIPS
V = Values people I = Individuals needs P = Perspective of service user S = Supportive social psychology
To further emphasise this, and to support services to become more person-centred in dementia care, Brooker – in developed the VIPS framework stating that person-centred dementia care involves the following elements:
1) Valuing people with dementia and those who
care for them
2) Treating people as individuals
3) Looking at the world from the perspective of
the person with dementia
4) A positive social environment in which the
person living with dementia can experience
relative wellbeing

17. 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
- Embedded within this model of practice are the processes by which service providers maintain the personhood of those who receive their services
- For Kitwood (1997:_) ‘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.’

18. Person Centred Care for BAME communities
Represents the guiding principles for what it means to be culturally competent.
Person-centred care for people with dementia and their carer and family members from Black, Asian and Minority Ethnic communities is a very useful tool for helping us to both understand and meet their needs. This is because person-centred care actually represents the guiding principles for what it means to be culturally competent.

19. 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).
In the literature, cultural competency is a contested term and has different meanings for different people. For some, it is about having an awareness of cultural norms and for others it is about being sensitive to them. Let us be clear by what is meant by the term ‘cultural competency.’

20. 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.’

21. 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).

22. Person-centred care with BAME communities
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
- As suggested by Mackenzie (2007) person-centred care with BAME communities involves them being treated as individuals alongside knowledge of the social and political influences on their lives rather than regarding them as members of ‘other’ groups.
- This is therefore about promoting inclusivity in existing services as opposed to developing separate specialised services.

23. 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)
The social influences in peoples lives are associated with their culture and community norms.
Research with South Asian carers of a family member with dementia for example, has highlighted that
the stigma of mental health is higher in these communities in comparison the White British population
there is a reluctance to ask for formal support and even when it is made available refuse to accept it
there is an external community pressure to maintain the responsibilities associated with the carers relational role to the cared-for person
and a need to portray an image of well being to those outside of the family. Research carried out by Mackenzie in suggests that this is due to arranged marriages. Arranged marriages are still practised in South Asian communities today whereby proposals are accepted based on a family’s respect and status within the community. If a there is a member of a family that has a mental illness – it may well be the reason why a marriage proposal is refused. Such conditions are often kept within the immediate family only – especially where there is an unmarried daughter.
For those of you who haven’t met me, I am also of South Asian decent –a Sikh woman who lives in a very close-knit Sikh community in Wolverhampton. My father had Korskoff’s Syndrome and during my years of caring for him I recall many occasions where extended family members would often shout at my father – asking him to ‘behave’ as it would not make me a suitable candidate for marriage.

24. Political Influences Life history
Understanding migration experiences and what these mean for groups and the individual
Taking all this into account…. I’d like you to have a go at an imagination exercise to appreciate the importance of personal histories and migration experiences for a person living with dementia. Let’s imagine a specialist service.
A day care facility has been set up for people living with dementia from South Asian communities. The providers felt that this would be a good way to meet the cultural needs of this particular group of people. Staffing has been a problem but the providers managed to recruit 3 members of staff from various South Asian backgrounds and also have a male White British carer. In the lounge sit 3 gentlemen – they are of the same generation and all have dementia. There is Sukhvinder – a Sikh from rural Punjab, Rajesh – a Hindu also from Punjab, and Abdul - a Muslim from Pakistan.

25. 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
In order for you to understand that having staff from the same cultural background as the people they are caring for, may not always be the solution for providing culturally competent care, I need to explain to you the ethnic identity and cultural diversity of communities. Whilst there are similarities across different ethnic communities, there are also differences both within and across communities based on their religion, migration experiences, language and caste.
For example, there are two men; one is a Muslim and the other is a Sikh. They are different religions however, because they both migrated from Punjab in India, they have similar cultural norms and both speak Punjabi. Two Muslim gentlemen – though share the same religion, could be very different if one is from Pakistan and the other from Punjab – language being one of the differences. There can also be further differences based on the caste system.

26. Caste
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):
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.
Jats - the ‘landowners’ and ‘farmers’ and comprise approximately 50 per cent of the rural population of the Punjab.
Craftsmen and service caste - comprise approximately 15 per cent of the rural population, of whom the Ramgarhias (carpenters) are the largest group.
The ‘untouchables’ - comprise approximately 25 per cent.
I am going to assume that people do not know about the caste system. Using the Sikh community as an example, let’s break it down.
Broadly speaking, a caste system is a process of placing people in occupational groups. It has pervaded several aspects of Indian society for centuries.
Castes are ranked in hierarchical order which determines the behaviour of one member of society over another. Castes within the Sikh population in rural Punjab fit into a hierarchy comprising four broad categories which are similar across other South Asian communities. It is important to note that whilst Sikh theology is against the caste system, it is a cultural norm that continues to influence many members of Sikh society.
Right at the very top of the caste system you have those known as Brahmins and Khatris – these are known as the priestly class who traditionally acted as warriors to the Gurus. They are thus considered the rulers and military of society.
In order to understand the next three categories, I would like you to imagine 1940s rural Punjab village life. What do you need to make a village function in a time when there is no machinery and import and export? You firstly have the landowners, commonly known the ‘jats.’ This is the group of people who own the land, grow the crops and feed the people. You then have your craftsmen and service castes. Builders and artisans, electricians, tailors, pottery makers, shoe cobblers so on and so forth. Castes are revealed by family name. For example, I am a Jutlla which indicates that I am a carpenter by caste – though evidently I have never worked with wood and doubt highly that I have the skills to create anything that is of possible use to anyone. Having said that, my father was brilliant carpenter – a skill he claimed to be in his blood.
Moving on, at the very bottom we have the untouchables – a term used in scholarship to describe a group of people traditionally considered as ritually unclean due to their responsibilities of keeping the streets clean. In many cases, they are often employed as servants and home helpers in India by members of the higher castes. Their duty is to serve others. The term untouchables is also used to highlight that it is, or was, deemed inappropriate for members of the other castes to come into close contact with this group of people. Research by Nesbit in 1994 highlighted that even though many of these caste members have done well for themselves in the UK, members of the other caste groups still perceive them within a low social class status. Unfortunate, but true for some.
Though the caste system is fading in India today, it is particularly strong in the UK as many cultural norms are strengthened by way of maintaining one’s cultural identity in a country where it is considered a foreign concept.

27. Let’s imagine a specialist service…
Key Historical Events
Sukhvinder (Sikh)
Rajesh (Hindu)
Abdul (Muslim)
1947 Pakistan/India partition X
1982 Khalistan movement in India X
Dictaphone folder c, no. 10

28. Sukhvinder – a high caste Sikh
Key life events
The low caste Sikh care worker
The male White British care worker
Growing up in rural Punjab X
1960s UK – experiences of the National Front X
Dictaphone folder c, no. 10

29. Darshan Kaur, aged 49 years, cares for her mother
‘Her [mother’s] benefits weren’t covering it so everybody, all the sisters were putting in their little bit so that she 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 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? you know whether they’re Jat... so you know, you can say that you don’t have those sort of problems… but it’s just in their system really isn’t it? 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.’
To emphasise this point further, I am going to read out a quote by a lady called Darshan Kaur. Her mother was staying in a care home prior to Darshan removing her as she wanted to care for her at home. She spoke briefly of her mother’s experience of this care home. Remember that a Jat is a high caste Sikh – and that is what Darshan’s mother is.

30. Diversity Diversity within BAME communities
Diversity within South Asian communities
Diversity within one community (i.e. the Sikh community)
One size does not fit all
What this illustrates is the diversity within…

31. Rani, aged 44 years, cares for her father-in-law
‘He went into respite care, became unwell and ended up in hospital for a while. I didn’t realise he wasn’t eating until I went into visit him and saw a sign by his bed saying nil by mouth. I questioned them about this and they told me that the speech therapist had been in and confirmed that he could no longer swallow. They said that he should go to Compton Hospice... They were basically telling me that he was ready to die and there was no way back for him. So, naturally, I demanded to speak to the speech therapist...
Rani cares for her father-in-law. Having migrated from East Africa, she has undergone education modelled on the western pattern and consequently has very good English speaking and literacy skills. The East African Sikhs in my research were better able to negotiate support for their family member with dementia when compared to their Punjabi peers from rural Punjab. She spoke about an incident with service. She said… he (her father-in-law)… went into….

32. ©Copyright Karan Jutlla
Rani cont...
...she was assessing him with a banana yoghurt. I couldn’t believe it. He doesn’t like bananas and he doesn’t eat yoghurt. I took some home cooked Indian food in and he ate it.. He ate it all in front of her. That day I brought him back home and decided that he would never go to respite again, or to any other place for that matter. If I didn’t go in, he would be in a hospice dying right now. What made them think they could make such a massive decision like that without talking to us first Karan? What kind of a system is this?’
©Copyright Karan Jutlla

33. In the case of Rani…
Was this because staff weren’t culturally competent?
Or… because staff weren’t being person-centred?
In the case of Rani, the question I aske you is…
The answer, of course, is because staff weren't being person-centred as there was an obvious lack of communication.

34. Pilot study participant, aged 70 years, cares for her husband
‘When he used to go to day care, they just assumed that he wanted Asian food and that he wouldn’t be interested in the fish and chips they served every Friday… but we’ve always eaten fish and chips on a Friday. The children used to love it.’
Similarly, a participant from the pilot study removed her husband from day because…. When he ….

35. A person-centred approach
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
It is important to know that understanding cultural norms and discourses help us to understand where people are coming from. It helps us to understand why people may do the things that they do. However, it is absolutely crucial to understand that people’s interpretations of those norms are dependent upon their own life experiences. I, for example, wouldn’t like people to make assumptions about my preferences based on the fact that I am a Sikh.

36. We need to…
Build a “culturally competent” workforce: increase confidence/defeat stereotypes/understand the challenges
Work collaboratively with community organisations, faith groups and families
Know about other work in this area
A clear value base:
Cultural competence is a set of congruent behaviours, knowledge, attitudes and policies that come together in a system, organisation or among professionals that enables effective work in cross-cultural situations (Lee and Farrell 2006)
We need to therefore, build a “culturally competent” workforce to increase confidence, defeat stereotypes and understand the challenges.
Work collaboratively with community organisations, faith groups and families
Know about other work in this area so that we can share good practice and have a clear value base which, as described by Lee and Farrell, is about working towards a set of congruent behaviours, knowledge, attitudes and policies that come together in a system, organisation or among professionals that enables effective work in cross-cultural situations.

37. Person Centred Guiding Principles (Brooker 2007)
Do my actions Value and honour the people that I work with?
Do I recognise the Individual uniqueness of the people I work with?
Do I make a serious attempt to see my actions from their Perspective or stand point?
Do my actions provide the Support for people to feel socially confident and that they are not alone?
Going back to Brooker’s VIPS framework, services should ask themselves…..

38. The Association for Dementia Studies
Cultural competency training key part of all education courses
A specialised dementia education programme for the domiciliary care sector to promote cultural competency
Research and knowledge transfer:
ESRC Seminar Series: Age, Race and Ethnicity
Connecting Communities Project: External evaluation
Service development: ensuring cultural competency at the outset (Royal Surgical Aid Society)
Consultancy work (existing services)
Sharing good practice: An international collaboration in South Asia?

39. Thank you… any questions?
Dr Karan Jutlla
Association for Dementia Studies
University of Worcester
University of Worcester Association for Dementia Studies