We weren’t aware of just how much she was struggling, and it was probably because she didn’t want the family to worry about her. She was diagnosed with dementia during a stay in hospital, and this was just the beginning of her journey.
My grandma remains at the forefront of my mind every day.
Why this role is needed in London Chinese communities
In Chinese culture, there is a real stigma surrounding dementia. It is quite common for a family member to receive a diagnosis of dementia or suspect a diagnosis, and to keep it a secret from the family. In some cases, where the person’s family is aware of the diagnosis, they may hide it from others due to the shame surrounding the condition.
The traditional term to describe a person with dementia translates as ‘silly’ or ‘dumb’ in Mandarin and Cantonese. In many Chinese-speaking societies, the term has been replaced with a more neutral word to remove this stigma and adopt a kinder approach, but there is more progress to be made. Dementia UK’s Admiral Nurse clinics service, along with the Chinese Welfare Trust, has adopted this modern term to empower families from the community.
It is common amongst people from Chinese and South-East Asian communities for symptoms of dementia, including forgetfulness, to be considered a ‘normal’ part of aging — which means some people never get a formal diagnosis. Many families do not receive vital information about dementia, including information on signs and symptoms, and diagnostic and post-diagnostic services. This is largely due to difficulties in navigating health services as a result of language barriers, lack of information, and access problems.