We are a culturally and ethnically diverse nation. We have both well-established and new communities from all over the world. Indian, Bangladeshi, Pakistani, Jewish, Chinese, Irish, Polish, Italian, Nigerian and Jamaican communities represent just some of our larger communities but people from all over the world live in the UK. Our diversity should be reflected in the care and support of people living with dementia and their families.
Over 25,000 people living with dementia in the UK come from black and minority ethnic (BME) backgrounds. Evidence suggests that people from minority ethnic communities are less likely to seek help and more likely to feel isolated.
Finding Patience https://youtu.be/Q7zJL8nPqFg was made to raise awareness of dementia in African and Caribbean communities and break down some of the stigma around dementia. It encourages people to talk about dementia and seek support.
Different understandings of dementia and care
Stigma, shame and fear of dementia are common reasons for people not seeking support in all communities. However, there may be no word for dementia in some languages, or dementia may not be viewed as a medical condition in some cultures. Negative views and descriptions may dominate. For example, dementia may be described as ‘lost intelligence disease’ or may even result in accusations of witchcraft.
In some cultures, people may want to keep care and support in the family or may feel community pressure to do so. There may be certain expectations in the family or local community about ‘looking after your own’ and not letting others know they may be struggling to cope. There may be a reluctance to talk about illness in general or to actively seek help.
People may be afraid that services just aren’t suitable, and that the person will be isolated from their important cultural or religious beliefs and rituals. There may be concerns about time for prayer, respecting dietary requirements, and staff who can speak the same language. People may also fear racial prejudice from services.
A nation of over 300 languages!
Although over 90% of the population state English as their first language, over 300 languages are estimated to be spoken in the UK. However, this will vary across the UK. Indigenous languages such as Welsh and Gaelic are the first language in some communities as well as many other languages. How many words will there be for dementia in the UK? Are there translation services which can help? Can families help provide support with language and translation for someone who may have been able to understand and speak English well but revert to their ‘mother tongue’ as dementia progresses? https://www.alzheimers.org.uk/dementia-together-magazine/june-july-2019/losing-your-english-reverting-your-mother-tongue-dementia
Respecting religion, customs and rituals to support dementia care
Familiarity of our traditions, customs and rituals bring us all comfort. Connecting with our memories from the past and keeping in touch with people who share our beliefs and traditions is important for us all. This can be particularly important for people living with dementia.
Festivals, holidays, and religious events such as Christmas, Ramadan, Passover, Diwali and Chinese New Year give us the chance to get together, wear special clothes, eat special food, share gifts, remember old memories and enjoy the moment. Everyday rituals such as attending Sunday mass, tying a traditional turban or sari, daily prayer, and eating kosher food forms the daily rhythm of our lives and our everyday routines.
People with dementia may hold on to long held beliefs, rituals and practices because they have been an important part of their life and identity for so long. They may remember the words to prayers or hymns they have practiced since childhood but forget last night’s TV programme or a conversation earlier in the day. The person may need help to get to mosque safely, or a recipe and an extra pair of hands to prepare a celebration meal they have cooked many times before. Families, communities and services can work together to help provide this support.
Awareness, respect and support to help people to take part in everyday or special customs and rituals are key to good dementia care. Moving away from ‘otherness’ and celebrating different festivals can help people come together and enjoy the common things we enjoy. A sense of belonging, purpose and happiness through customs and rituals can counter some of the negative aspects of dementia such as fear, stigma, loneliness and loss.
Information about dementia in languages other than English
There are a range of online resources which can be used to provide information about dementia in different languages.
Find information about dementia in other languages you can share with the people you support. https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-guide-other-languages
You might find additional resources from dementia associations around the world for example https://www.alz.org/it/alzheimers-association-italia.asp which lets you switch between English and Italian. The site is also available in many other languages such as Chinese, Vietnamese and Spanish.
Alzheimer’s Disease International https://www.alzint.org/ has 105 member associations around the world and can help you find information about dementia support in other languages.
Putting people in touch with culturally diverse services
All services should provide person-centred care which takes into account diversity. However, there are many services which are aimed at specific communities. Here are some examples:
CultureDementiaUK https://www.culturedementiauk.org provide support for people living with dementia from African and Caribbean communities. They are based in London but provide a 24 hour freephone helpline for people anywhere in the UK 0800 014 8682.
Although services might be local, they may have websites and telephone support for people in other areas. For example, Dementia Friendly Gurudwaras https://dementiafriendlygurudwaras.com/ is led by Sikh healthcare professionals and is based in Bradford, but has outreach to other areas.
Dementia Friends groups may also have specialist groups such as Dementia Friendly Keighley to support the polish community https://dementiafriendlykeighley.org.uk/polish-community-centre/
You may also find services that are not dementia specific, but may be aimed at older people in the community such as North East Chinese Association – http://necauk.org.uk/ . This may also help carers to keep connected.
Your local dementia advisor or social prescriber can help you find services in your area.