A lack of specialist services can leave a person with dementia cut off from their community

‘I see what support is available to others, and it’s really sad that it’s not there for Dad,’ says Samia Egeh.

Ali, Samia’s father, was diagnosed with vascular dementia around 10 years ago.

He grew up in Somaliland – an autonomous region of Somalia in the east of Africa – before moving to Cardiff as a teenager, where he still lives. 

Ali now prefers to communicate in the Somali language, but Samia says there are no local services that meet his cultural needs.

This leaves him cut off from a community that, as a part of which, he previously thrived.

‘It would be nice if he could benefit from services,’ says Samia. ‘I think it’s unfair that someone who has contributed and paid taxes now can’t get anything back.’

Samia is calling on those in power to listen to the voices of the communities they serve. 

‘They’ve been told over and over, reports have been done – I’ve taken part in so much stuff, it’s exhausting. And we’re still not being heard,’ she says. 

‘This is a message for the Welsh Government to put money where their mouth is.’

Loving and gentle 

Ali, now 83, first came to Wales to join a family member who was already in the country. 

‘My father was from a working class family – his father had quite a hard life,’ says Samia. ‘Dad came straight into work, washing dishes in restaurants. He had many different jobs, hard jobs, like working in a steelworks.’ 

Ali went to college but not university, as he felt that supporting his family should be the priority. 

‘He knew they had it tough, so he wanted to help them financially,’ says Samia. ‘He used to get paid £21 and told me that he spent seven, saved seven and gave seven to his family.’ 

Samia, who is one of four siblings, describes her father as hardworking, loving and gentle. 

‘He didn’t want us to go through what he went through, so he made sure we had a good life,’ she says.

A proud man who always liked to look smart, Ali loved walking and nature, as well as playing cards and doing crosswords. He was also very connected to his community and wanted his children to experience a balance of Somali, Welsh and British culture. 

‘He always promoted us being respectful citizens,’ says Samia. ‘He really believed in his family, and we’re very proud of him.’ 

Losing confidence 

Around 10 years ago, Ali had two strokes. This led to a CT brain scan and visit from the memory service, and a diagnosis of vascular dementia. 

‘We’d realised he was getting forgetful, and starting to lose confidence,’ says Samia. ‘He had always been an outgoing, bubbly person but he started not wanting to see people, because he was embarrassed at forgetting them. 

‘At first we all just carried on. We were quite ignorant ourselves and didn’t know much about dementia or how to deal with it, so we didn’t.’ 

Following Ali’s diagnosis, Samia improved her understanding of the condition. 

‘I went on training and even changed jobs to work with older people,’ she says. ‘I wanted to try and make sure my father had a better quality of life.’

However, Samia hasn’t been impressed with some of the professional support that Ali and the family have been offered. 

‘A dementia nurse visited for his medication. That was one visit and then never seen again, which I was quite shocked about,’ she says. 

A package of care, including home visits, was suggested for Ali, but Samia felt that these visits were too short to be of any real benefit to her father. 

‘He has cultural and religious needs to be met, and certain home comforts that are very crucial, so they would need to be longer visits, even if they weren’t as often,’ she says. 

Specialist services 

Samia is also upset that a lack of culturally appropriate local services has left Ali socially isolated. 

‘Dad used to really enjoy seeing his friends and people in the community, or even just listening to people speak about what’s going on in the community,’ she says. 

‘He wants to speak Somali and speak about his childhood memories, but there are no tailored services that meet his needs.’ 

This lack of social stimulation and cultural connection has had a negative impact on the whole family. 

‘It’s affected Dad physically and mentally, and means he’ll go downhill faster,’ says Samia. ‘It’s really sad and upsetting that he doesn’t go out, and the family don’t get any respite either.’ 

Samia feels that much more could be done to improve the situation, by developing specialist services. 

‘I’d like to see a memory café with different activities. You could have a luncheon club or do intergenerational work with schools. You could have specialists come in to give tips about food or eating, to help make sure that people’s wellness is there. 

‘Once you build relationships, you can see what the people enjoy and what their needs are. It could even be under the same roof as existing services. 

‘It would benefit Dad physically, mentally and emotionally. He’d be seeing people and would be happier, with a better quality of life.’

Reach everybody 

Samia believes that more should be done to support people like her father. 

‘Why are people from Black, Asian and other minority ethnic communities being treated differently? We’ve got the same rights as everybody else. Why don’t they come out and reach us?’ she says. 

‘There’s a lack of understanding and awareness. Someone like Dad is not recognised or represented – he’s totally ignored. Obviously they don’t care. I’m quite disgusted, to be honest.’ 

It isn’t only her father who Samia is concerned about, but also others who may be in a similar or worse situation. 

‘I’m sure we’re not an isolated case,’ she says. ‘Mum helps him, and we support him – we’ve got a system. But what about those who aren’t in such a favourable place? I really worry for them. 

‘At some point dementia is going to affect us all. I want to raise awareness and ensure that the message reaches everybody.’ 

And whether it’s in her professional or personal life, Samia will continue to advocate for older people. 

‘They’ve done so much,’ she says. ‘If it wasn’t for them, we wouldn’t be who we are.’