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Many people struggle to get a diagnosis of dementia, but if English isn’t your first language, or the first language of your loved one, the process can be even more difficult. We spoke to Rummana about the subtle changes she noticed in her mother and how their family sought a diagnosis.
Rummana is a Dementia Advocate and carer for her mum who lives with dementia. Rummana’s mum was diagnosed with dementia in 2017.
Something has changed
The first sign something had changed with Rummana’s mum was very subtle.
“Mum went quiet, for someone who was very vibrant. She wasn’t the most talkative but she would joke, she would laugh, and she had started going quiet,” Rummana said.
Rummana’s parents had been living overseas and when they returned, she realised something was different.
“This was the first time that mum was living without us kids, there was always one of us with my parents,” Rummana said.
“I actually thought mum was depressed. I just thought, there is a lot of life changes happening, this is when her and dad are off on their own adventures, but she is very attached to us kids and she is missing us, that’s what I thought it was. Or she’s bored. She’s overseas, she’s not with her friend group, she’s gone to an unknown place. All those things I just thought it was an accumulation of those factors that has just been too much for her.”
Rummana’s family are from Bangladesh and at home they would speak Bengali and English.
“By the time we picked it up it was really late. It probably started gradually and maybe the mark of it was when she was speaking English less and less. Because we generally speak in English at home,” Rummana said.
“It’s a tough one because mum still understood what was being said to her in both languages. It’s more her verbal communication that started altering. People who spoke Bengali also said she was going quiet, so it wasn’t just that she was preferring Bengali or English, overall she was speaking less.
“Her friends had noticed it and they thought she had become more snobbish. Many people were offended.”
Seeking a diagnosis
It is not uncommon for people to struggle to get a diagnosis, but the added cultural barriers made the process even more difficult.
“If you have been moving around a lot it is very difficult for a GP to know your personality. This GP was new and he said, ‘Oh she has always been like this it’s probably nothing’,” Rummana said.
“But he sent her for an MRI and the scan showed it. That was the first step. Then they sent her to a neurologist and that is where denial kicks in.”
When Rummana’s parents went to the neurologist they found the tests were not culturally appropriate.
“The tests were tailored for someone for whom English is their first language, and not just that, that they have lived in Australia since they were young. You’re going to give someone an address in Rockhampton, who has no idea where Rockhampton is. It’s even more difficult for them to retain that knowledge,” Rummana said.
“Dad’s argument was that because the test was ridiculous, it wasn’t mum that was ill it was the test that was ridiculous. Even on a good day, if she was healthy, mum wouldn’t remember this.”
After the diagnosis
Rummana said her family had a very different experience to many after her mother was diagnosed with dementia.
“After she was diagnosed, I was really pleasantly surprised by how many family and friends kicked in. They started visiting mum, and dad slowly started approaching people about helping him. People would come and visit, take her through photo albums, there would be a range of things they would do with my mum,” Rummana said.
“It changed my view about what community is, because what I saw was people bringing over a lot of meals for my parents. They were not isolated, my dad would get phone calls all the time, people checking in on them all the time.”
Dementia is a degenerative condition and Rummana isn’t sure how long her family will have left with her mother.
“I’ve reconfigured my life so that I can go visit them more often. I quit my job and created my own company. I’ve done things that I ordinarily might not have. It forced me to be a bit more creative.”
If you are worried about a loved one, or living with dementia, we’re here to listen when you need it most. We’re here whatever the reason. Because there are hundreds of reasons to call, each as unique as you. Call the National Dementia Helpline on 1800 100 500. We’re here 24 hours a day, seven days a week, 365 days a year. If you require the assistance of an interpreter, please call the Translating and Interpreting Service on 131 450.
We also have a range of help sheets and resources, including the Dementia Guide, which have been translated into a variety of different languages. For translated resources please visit https://www.dementia.org.au/languages.
Want to read more about diagnosis? Check out these articles:
Is there a point to getting a diagnosis of dementia? Many people can live well with dementia for many years but as there is no cure is there any point to getting a diagnosis?
How do we diagnose dementia and what could improve this process? As diagnosis is the first step to living well with dementia for as long as possible, what can help improve the process?
Now I have a diagnosis, what’s next? People first diagnosed are often unsure of how to feel or where to turn. In this article we hear from people living with dementia about what they experienced, and what everyone can do to support people diagnosed with dementia.
Can a diagnosis of dementia inspire a positive outlook? When Russ started having trouble with his vision he put it down to his optical prescription and was initially misdiagnosed. Russ says he still hates the day they told him he had dementia. Find out how he changed his outlook.
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