Getting to know the person with dementia

Culture matters

Key messages

Dementia is a hidden, stigmatised problem in Asian communities
Often Asian carers are reluctant to ask for support: they fear their community will disapprove and they have low expectations about care services
Social care organisations need to take time to learn about the cultures of the people they are working with and ensure that care services are appropriate and address cultural needs
Person-centred care means care that recognises the cultural needs of individuals

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.
Carer quoted in Jutlla (2011)

Explore the links below now to read more about this topic:

1. Introduction Open

This feature explores the challenges and issues for Asian people living with dementia and their carers. It looks at how care providers can offer 'culturally competent' care – or care that recognises and meets a person's cultural needs, in particular in care homes. The feature draws on a wide range of research and in particular my work with Sikh carers of people with dementia in Wolverhampton.
2. What we know about dementia in Asian communities Open

There is a lack of dementia awareness among Asian communities in the UK, partly because there is no equivalent word for dementia in any of the South Asian languages (Seabrooke and Milne 2004; Jutlla and Moreland 2007).

Several small-scale research projects reported similar findings about the challenges and issues for Asian families where a person has dementia (Moreland 2001; Seabrook and Milne 2004; Jutlla and Moreland 2007; Rochfort 2008; Buffin et al 2009). These projects found that there is a lack of knowledge and understanding of dementia among Asian carers and among the Asian community in general. In turn, this has had several implications: dementia remains stigmatised and hidden, people are more likely to mistake symptoms of dementia with old age, and carers are isolated. They also noted that health and social services lacked cultural awareness, sensitivity and competence to meet the needs of this community, with language barriers a particular problem.

Research has also reported that Asian carers caring for a person with dementia are reluctant to ask for support, creating further difficulties in accessing this particularly hidden community of carers (Boneham et al 1997; Rochfort 2008). According to Blakemore and Boneham (1994, p78): 'Asian people's social lives and priorities are often seen as “too different” from majority norms, incomprehensible and insufficiently adapted.'

Asians may well be socially excluded as service users due in part to institutionalised racism (Patel et al 1998), as well as the added difficulty of the stigma associated with mental illness (The Sainsbury Centre for a Mental Health 2002; Turner and Benbow 2002). There remains a lack of specialist service provision for the Asian community (Moreland et al 2004; Jutlla and Moreland 2007).
3. Lessons from the Sikh community in Wolverhampton Open

My research involved a study of Sikh carers of people with dementia in Wolverhampton, West Midlands. I found that these people's experiences of caring for a person with dementia were almost completely shaped by being part of this migrant community.

The Sikh community in Wolverhampton was established by people who migrated from the rural parts of the Punjab (a region extending across Indian and Pakistani borders) in the 1950s. This community has cultural expectations about who should take on certain roles and jobs within the family unit. These expectations have strengthened as a result of migration to the UK.

In this community, the role of a 'carer' is seen as an extension of the person's role in relation to the person who needs the care and support. For example, a daughter-in-law will be expected to care for her father-in-law as he gets older. There is huge pressure on people, and women in particular, to conform to their roles. Because of these pressures, some carers fear that they may become stigmatised by accepting formal support from services.

I found that those who did accept formal support felt that some services are (or would be likely to be) culturally inappropriate for the person with dementia. For example, a carer caring for her father-in-law talked about her fears for her father-in-law if he has to live in a care home:

'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.' (Jutlla 2011)

Another carer explained that she ended the respite care on offer because she was afraid that the day centre staff would unknowingly break her husband's oath as a baptised Sikh, which means he has very strict dietary requirements. She said:

'They (staff) always give them biscuits with their tea... which is nice but he can't eat biscuits because most of them have egg in them. Now, he can't tell them that he can't have that, so he will just eat it... I can't take that risk... even if it means that I don't get a break.' (Jutlla 2011)

It is clear that there is a need for dementia education and awareness-raising in Asian communities to encourage Asians to engage with dementia services. At the same time, when they do seek support, the Asian community needs to be confident they will have access to culturally competent services.
4. Delivering culturally competent care: a person-centred approach Open
According to Brooker's VIPS framework (2007), a person-centred approach to dementia care is made up of four elements:
- V a value base that asserts the absolute value of all human lives regardless of age or cognitive ability
- I an individualised approach, recognising uniqueness of individuals
- P understanding the world from the perspective of the service user
- S providing a social environment that supports psychological needs.
In this next section, I look at applying this VIPS framework in a way that takes account of users' cultural needs, in particular in care homes.

Valuing people Staff need training and development opportunities to help them become a culturally competent workforce. The physical and social environment must also support and include those from minority ethnic backgrounds. For example, displaying South and East Asian colours, designs and prints within a care home would offer a warm, welcoming environment and represent an appreciation for different cultures.

Individualised care Each individual has a unique history and personality. In meeting individual needs for those from minority ethnic backgrounds it is important to pay particular attention to:
- food and nutrition – are there any dietary requirements?
- clothing – are there any religious requirements? (For example, a baptised Sikh must wear the 'five K's' at all times which represent symbols of Sikhism)
- personal hygiene (For example, many Sikhs do not cut their hair and prefer to bath in running water)
- faith – are there any particular prayer times?
Personal perspectives For people with dementia, their earliest memories tend to be the strongest. The majority of older Sikh migrants in Wolverhampton migrated during their adult years. Their earlier memories are associated with their countries of origin which for the Sikhs in Wolverhampton, involved memories of rural Punjab. The drastic difference in the physical environment of their villages back home compared to their physical environment in the UK (for example the difference in housing design and open space) is extremely challenging for a person who has dementia. Understanding their migration history is crucial for providing cues about potential challenges in the person's behaviour.

Care staff also need to be aware of cultural norms such as those associated with gender. For example, many older Sikh women will cover their head in the presence of a man and may not make eye contact.

Social environment The social environment of the organisations needs to make them feel included and respected. Offer activities that celebrate culture and difference, and where the person with dementia feels they can take part. Invite people from the person's local community to visit. Bilingual people with dementia will revert to their mother tongue at some stage. It is important therefore that staff have basic Asian language skills specific to that person, such as the ability to say hello and ask if they are okay.

Involve family members in the care plan for the person with dementia. Where family members are not available, care home workers need to be aware and sensitive to the cultural needs and possible religious requirements of the person concerned. They too need to have basic knowledge about their migration history in order to understand the perspective of the person with dementia and their earlier memories. This may be achieved through life story work such as the creation of a collage.

Over to you!

Click here to do a quick activity that will deepen your understanding of this topic. The activity can be done alone or with colleagues and you can also download a copy. Trainer's notes have also been provided.