Real stories

‘People need to know that it’s OK to accept help’ – tackling stigma about dementia

Alex was brought up by his mum To in Vietnam’s Chinese community, moving to the UK in the late 1980s, when he was around 11. 

They joined their gran in Sheffield, who had settled here after fleeing the Vietnam War. 

My Mum was a very strong woman. She had to be, raising me all by herself.

‘Being a single mum in Vietnam is particularly tough as it’s not easy to make a living – there wasn’t a welfare state to provide benefits.’ 

To made a living selling street food, specialising in a type of dessert made from mung beans. 

‘She would sell it from a cart in Ho Chi Minh City, pushing it to the centre while she carried me. 

‘I don’t know how she had the strength and tenacity to do that, to be honest.’
 

Relentlessly hard-working, To used her cooking skills in the UK too, working in restaurants and cafes around Sheffield. Alex describes her as energetic, big-hearted and generous to a fault. 

‘If we were ever out in the city centre and we saw someone asking for money, she just couldn’t help but give them money.’ 

To wanted her son to succeed, ‘like any Chinese parent’ says Alex, who works as an engineer in the NHS. But he said that she needed his support as much as he needed hers. 

She spoke Cantonese and her English wasn’t great, so I acted as her translator. 

Strong family bond

Family is sacrosanct in Chinese communities, explains Alex. So even after he reached adulthood and left home, his bond with his mum remained unshakeable.

There wasn’t a translation service available, so I was having to translate between the GP and Mum. And the GP was extremely dismissive of Mum’s symptoms.

It doesn’t matter if you’ve flown the nest and your parents are older. Family is everything.

And when To first showed the early symptoms of dementia, it was Alex who was there to support her. 

‘She went missing – that was the first sign something wasn’t right,’ explains Alex. ‘Normally, wherever she went, she would ring and tell me. I was so worried, I ended up calling the police. 

‘Eventually, I got a call from an amusement arcade – Mum loved to play on the fruit machines – to say she was there and her phone had run out of battery. 

Although I thought it was strange at the time, I didn’t realise it was a sign of anything serious.

It was in 2019, when To started to forget what time of day it was that Alex decided they should see a GP. 

But it was a frustrating experience, explains Alex. 

‘There wasn’t a translation service available, so I was having to translate between the GP and Mum. And the GP was extremely dismissive of Mum’s symptoms.’ 

Dissatisfied with this experience, Alex took his mum back again, where they saw a different GP who referred her to a memory clinic.

Thankfully, the memory clinic offered an interpreter. But after To was given a diagnosis of Alzheimer’s disease, Alex said he felt extremely alone and overwhelmed. 

‘I was left thinking, “How am I supposed to make sense of all this?”. They flooded us with information on dementia and sent us on our way. It was totally overwhelming.’

Feeling alone as a carer

Although Alex received support from Alzheimer’s Society after his mum’s diagnosis, mainly to make sense of lasting power of attorney, he continued to feel very alone and overwhelmed. 

His initial efforts to get support from his local authority were fruitless and his mum expressly did not want him to reach out to the Chinese community in Sheffield. 

This meant he had to absorb her care and handle her worsening symptoms, all while working full-time. The pressure was unbearable.

‘Changes in her behaviour were particularly hard to deal with,’ he explains. 

To would frequently catch buses and have no idea where she was, meaning Alex would have to leave work to fetch her. He gave her a tracking device but as her symptoms progressed, she would forget to carry it. 

‘She became very attached to me. But with that she became very aggressive. She was like a very needy child. 

‘If I ever had to go away, she would get extremely upset and wouldn’t stop calling me. Our relationship became more and more strained.

‘Her whole world was changing and it must have been terrifying. At the same time, she couldn’t acknowledge there was something wrong with her. She was too proud.’

Moving to a care home

Pulled in every direction, Alex finally managed to get the council to agree to twice-daily carers. But this only went a small way to alleviating the strain on him, as there were no Cantonese-speaking carers available. 

After a terrifying near-miss, when To was discovered pacing up and down a dual-carriageway close to Sheffield city centre, she moved to a care home in 2022 when she was 83. 

I felt terrible. I didn’t want her to go into the care home, but I had no choice. 

‘The only alternative was for me to give up work, which just wasn’t financially possible.

‘She hated it there. She had no idea what was happening – again there was no one there to explain things in Cantonese – and kept trying to escape.’ 

Despite To’s reticence, Alex called their local Chinese association to get advice about his Mum’s care home. 

I absolutely should have made that call earlier. I was struggling. 

‘They helped arrange a Chinese counsellor for me, which was so helpful as they understood my culture and heritage.’ 

Alex’s message to other people in the Chinese community is don’t delay asking for help. 

Illness and death are taboo topics

‘In Chinese culture, families can shut themselves off. We tend to keep a low profile. We are underrepresented. This is completely different to the Western ideal that it’s better to share and be open. 

‘It’s the same with conversations about death, they are frowned upon. 

‘If there’s a death in the family, whoever it is, you’re not allowed to talk about it because it’s bad luck – and there are all sorts of superstitions.’ 

Alex was glad for a support group run by local charity Manor & Castle Development Trust and Heeley Farm. Given the difference it made for him, he’s keen to encourage other carers to find out what support is available to them. 

‘It made me feel less alone,’ he says, ‘and I would recommend anyone to join such a group.’ 

Sadly, To passed away in January 2024 after a fall at her care home. 

Alex says dealing with the guilt he feels about his mum’s care is hard. 

‘She brought me up in really difficult circumstances.’  

And when she needed my help, I couldn’t give her everything she needed. I feel bad about that.

He’s appalled at the shortage of staffing in care homes and the impact this has on the quality of care they’re able to provide. This is especially hard to accept given the fees that many people must pay. 

Photo exhibition about dementia

Alex is focusing his energies on raising awareness in his community, including taking part in a photography exhibition about the impact of dementia in Sheffield’s minority ethnic communities. 

‘I took a few pictures trying to give Mum’s perspective of being in a care home and what it was like for her. It was quite tricky for me to show anything positive.’ 

Alex has lots of ideas for addressing health inequalities and improving awareness and acceptance in the Chinese community. 

This includes improved translation services within the healthcare system and targeted awareness campaigns at a community level. But most of all, he wants to encourage people in his community with dementia and their families to open up. 

‘Families just deal with it and get on. 

We need to normalise dementia, bust the stigmas. 

‘And people need to know that it’s OK to accept help – it’s not shameful. You need as much help as you can get.’