In order for people with dementia to have a diagnosis as early as possible, it is important to raise awareness about the condition within the general public. Additionally, after receiving a diagnosis of dementia, it is important that people and their families are given information to help them understand the condition. Having early interventions in place can support people to cope with anxiety arising after receiving a diagnosis, and, in some cases, prevent life-changing events (such as a person giving up employment).
In ADAPT workshops discussions, South Asian family carers and people living with dementia suggested that this information should be given face-to-face, with advisers providing tailored support for families. Although leaflets can be useful, the first preference is a conversation:
Because you see, it's no good if somebody's been diagnosed and given loads of literature, that person is not going to read it. Because the diagnosis and the thought of having a diagnosis of a condition that has got no cure, his confidence, his concentration is well and truly gone. And he's not going to read the leaflets, he needs a face to face, or somebody actually sitting in front of me and explaining what it is that he’s got and how to overcome it. (South Asian male, living with dementia).
Healthcare professionals in the workshops observed that having a ‘champion’ who can liaise with the community is an effective way of disseminating information about dementia among the South Asian community. South Asian families suggested that someone culturally sensitive to the needs of the South Asian community is vital. Furthermore, people living with dementia told us that it is also important to have support from other people living with the condition.
Within the workshops, people expressed different understandings about dementia and its causes. Some felt that it was important to emphasise the biological causes of dementia – for example, that it is not just old age but results from changes in the brain caused by disease. A community organisation staff member claimed there is still a considerable need to raise dementia awareness among older generations who may think of the condition in other ways than a disease:
There was a dementia café for South Asian communities, but the stigma associated with the condition was a deterrent to people using this service. This can be culturally related to how dementia is perceived – i.e. as coming from the devil/black magic – particularly from the less well educated groups of the population. So perhaps the more informal steps might be more productive in terms of raising awareness and developing services that are appropriate and accessible. (Community Organisation staff member)
It was felt by some that working through younger South Asian people might be an effective way of reaching older generations who might lack literacy and English language skills and who also consider dementia stigmatised:
BME leaflets have been translated for older generation. Whereas the younger generation are more fluent in English so can access information more easily.
In addition to face-to-face support, South Asian families and people living with dementia felt that dementia support programmes are useful for learning about the condition and that people who are not experienced in using computers/the internet can be supported to learn new skills so that they may undertake dementia programmes to help them learn more about the condition.
Staff from voluntary organisations claimed that in their experience, printed information is less effective at promoting dementia awareness than visual or spoken material such as videos, radio broadcasts, and talks at religious organisations.
Where leaflets in South Asian languages are available, healthcare professionals claimed that translations need to be undertaken by experts in the field and completed word for word to ensure that the information is an accurate rendition of the original English version. Healthcare professionals also felt that leaflets and other information only work well with South Asian communities when they are simple and easy to understand.
On the basis of these workshop findings, we reviewed a number of resources. Based on information provided in our workshops, and an evaluation against a cultural competency checklist developed by the ADAPT team, we recommend that the following videos can be used to help raise awareness among the South Asian community.
Videos to know more about dementia
Based on information provided in the workshops, and an evaluation against the ADAPT cultural competency checklist, we recommended that the following leaflets can be used to help raise awareness about dementia among the South Asian community.
Alzheimer’s Research UK. Quick guide to dementia leaflet. Available in Urdu, Punjabi, Bengali and Gujarati. https://www.alzheimersresearchuk.org/blog/talking-about-dementia-in-south-asian-communities/. Available in all five South Asian languages: Punjabi, Hindi, Urdu, Gujarati, and Bengali. Also available in Arabic, Chinese, Welsh, and Polish. The English version has clear, easy to understand information (please note that we have been unable to evaluate interpretations of the different languages).
Manchester city council. Videos, leaflets and posters. https://www.mhcc.nhs.uk/dementia/. The videos have been included on the video resource list. The leaflets are available only in English, with one leaflet focussing on how to make a mosque dementia-friendly. There are awareness raising posters available in Bengali, Guajarati, Hindi and Urdu, which are a good resource for people wanting to put up posters about identifying symptoms and what to do next.
Alzheimer’s Society Dementia Guide in different languages https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-guide-other-languages. The dementia guide is available in Bengali, Gujarati, Hindi, Punjabi, and Urdu. It is also available in Arabic, traditional Chinese, and Welsh. There is a video talking viewers through the guide in English which is also available in BSL.
TIDE https://www.tide.uk.net/resources/bame-resources/. This website contains information about dementia care during Ramadhan and offers a carers leaflet. The carers leaflet contains information about the impact of stigma as opposed to advice and guidance. However, it could be useful for service providers. Both resources are available in English, Bengali and Urdu.
Dementia leaflets https://csrec.org.uk/dementia-information-booklet. This is a dementia booklet available in English and Urdu (also Polish and Chinese). It offers clear concise information (in the English version we reviewed).
The following website offers information on dementia but is available only in English. Though inaccessible to people who cannot read English, there is material about how faith affects dementia which could be useful for service providers.
Meri Yaadain http://www.meriyaadain.co.uk/livingwithdementia/