This is a proud moment for me and so I had to write a blog about it. I have wanted to produce resources about dementia for the South Asian community for some time now however; in order to get funding to produce something; you have to firstly prove that it is needed. What I mean by this is that in the world of academia – you have to show “evidence” from research that there is a need for it. Last year I was commissioned by Alzheimer’s Society to conduct some research with the South Asian community in England, following their diagnosis of dementia, to understand what their post diagnostic support needs are and whether their needs were being met. I spoke to 12 South Asian carers of a family member with dementia and one person living with dementia. Although they all lived in different parts of England, were diagnosed at different times (between 6 months and 4 years) and with different types of dementia, they all had one thing in common: they were isolated in their experiences with no support from services, family or community members. Which for some had devastating psychological, physical and financial consequences. Support from services was limited due to the lack of culturally inclusive dementia care. Because of their experiences, people gave suggestions for what was needed from services – one of which was the development of resources to educate people in South Asian communities about dementia. There is a real need to defeat the stigma that surrounds dementia and provide tools for younger people who may not be fluent in their mother tongue to share with their older family members.
Following the submission of this report to Alzheimer’s Society, and because of other work they had done in this area, discussions took place about the possibility of developing resources for the South Asian community in time for Dementia Action Week 16-22 May 2022. This was in January 2022 and realistically not enough time to turn around resources in five different South Asian languages (Urdi, Hindi, Punjabi, Bengali and Gujarati). With Punjabi being the third most spoken language in England, a decision was made to focus on Punjabi speaking communities by way of piloting this work.
As the Consultant for this work, I worked closely with Alzheimer’s Society and invited members of the South Asian community, who are caring for a family member with dementia, people living with dementia, clinicians and community workers to form an expert advisory group to help lead and guide this work. This included people who took part in the post-diagnostic dementia support research. They were our ‘go to’ group, to help sense check our ideas and ensure they were representative of the Punjabi communities in England.
The resources that have been produced in Punjabi include:
This is a 10-minute explainer video spoken in Punjabi (with English subtitles) on what dementia is, causes, symptoms and diagnosis. The video features Harjinder Kaur, who is a retired Community Psychiatric Nurse and advocate for older people in the South Asian community living with, and caring for a person with, dementia.
We spoke with the expert advisory group to note the important elements that this video needed to include. I then wrote a script in English which, once approved by Alzheimer’s Society, was sent off for translation into Punjabi. Once translated, I held a workshop with two interpreters to ensure that the translation was free of cultural nuances and represented the English version – a process known as translation-back-translation.
A True Story
This is a 3-minute video featuring Bhagwant, who lives with Alzheimer’s disease, spoken predominantly in Punjabi (with English subtitles). Bhagwant took part in the initial post-diagnostic dementia support research project I conducted. During her interview, she shared with me a compelling story about how she initially had a negative response to the symptoms she was showing from members of her community. Upon receiving a diagnosis of Alzheimer’s disease, she was able to educate people about dementia and help them understand that she is not ‘crazy,’ she has a disease.
Bhagwant is an inspirational lady. I spent the entire day on set with her during filming and felt incredibly moved by her passion and willingness to share her story in the hope that it will help other people. This film highlights the importance of getting a diagnosis and how, as a community, we shouldn’t hide things, “reality is reality.”
The following leaflets already existed as Alzheimer’s Society resources in English. They contain useful information about dementia that will help people understand the condition better. They were professionally translated into Punjabi and then shared with two independent interpreters to ensure that the translations were correct and true to the English version.
5 things to know about dementia (in Punjabi)
Worried about your memory? (in Punjabi)
For use with professionals, we also translated the Dementia Action Week campaign A4 poster and flyer ‘It’s not called getting old, it’s called getting ill’ and checked the translations the same as above.
All of these resources can be accessed via the new Alzheimer’s Society webpage at: www.alzheimers.org.uk/punjabi
I am so grateful to everyone who supported this work, especially those who despite being in caring roles, found time in their busy schedules to support this work. Without them, none of this would have been possible.
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