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I cared for my mum when she was diagnosed with vascular dementia and looking back, I remember how she enjoyed going along to her local Sikh temple which was a great place for her to socialise. She was also heavily involved in the women’s groups in local community centres.   

It was at an event in the temple about eight years ago that we met an NHS representative who told us about a six-week course for people whose first language wasn’t English who were living with dementia. The course was aimed at carers too.

I was delighted to see someone from the NHS getting out into the community to spread the word and offer this support. Unfortunately, the course was cancelled due to funding issues, and now I can’t help but wonder how many people could have benefitted from it. 

Getting the timing right is essential

As an active retired teacher with extensive experience of working as a volunteer in the local hospital, my mum was able to access the information and support she needed. We both got on a helpful alternative course – not aimed at those with English as a second language.  

But many others in her community missed out as they could not speak English. Getting on a specialised course at that time might have been their one opportunity to get the support they needed. 

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Getting the timing right is essential. I saw this with my mum. She got on that course at the right time, but over the years, her life changed. She went from being a popular, successful and sociable woman to dealing with not being able to remember a person’s name. As a well-known personality in the community, people would chat to her when she was out and about. But she would later admit to me that she didn’t know who these people were. While there’s no shame in asking people their names, her pride got in the way.

Over the years, her involvement in her groups became less and less. They became too noisy for her, and she didn’t feel she could contribute any more. 

Yet she still had so much more support than other people she knew in the temple. There will be so many in the Sikh community who won’t know where to start when receiving a dementia diagnosis.  

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I understand funding is an issue, and while there are many wonderful volunteers out there doing essential work, this is a critical issue. Isn’t it time to get more health care staff into communities too? People in different communities could benefit from understanding more about dementia. I can only speak from my own experience, but I think the women’s groups my mum belonged to would be a great starting point as they are often used as safe havens. 

We can’t assume that families will automatically provide support either, whatever community they align themselves to. With my background in general nursing and mental health, and experience in dementia care, I was well-placed to help. But for any loved one, a caring role in these circumstances is hard, scary and tiring. 

A caring role in these circumstances is hard, scary and tiring

Carers may also be struggling to access information in a language that’s not their own. Too many have to fight to look after their relatives, but a friendly smile, acknowledgement or thank you can go such a long way. People are living longer and more of us will become carers as time goes on. Please be kind, they will be tired and worried and feel that whatever they do isn’t enough.  

If you’re dealing with a patient with dementia whose first language isn't English, consider what information they might have access to and how lonely they might feel. Posters in different languages and working with local community groups can help.

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I want to see change. I want to see professionals, organisations and volunteers coming together to raise awareness and reduce isolation for everyone with this condition, not just those who can actively access services and support themselves.

This is my story and one of many. But this isn’t just about the Sikh community; it’s about every community and every individual who needs our help.