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Mohinder’s story – Reducing stigma in the Sikh community

Kaur talks about caring for her dad, Mohinder, since his mixed dementia diagnosis, and how community awareness needs to be improved.

Mohinder stands in the backyard with his right hand raised while speaking

Twelve years ago, my father Mohinder was diagnosed with Alzheimer’s disease and vascular dementia – commonly called mixed dementia. One of the first signs was leaving the gas on after he’d finished cooking. He’d lose his car keys. Then he failed a cognition test with our local GP. And finally, he started to open the front door and just walk off aimlessly. 

Dad moved to the UK with his family in the 1950s, when he was eight years old. The family home was in Manchester. After a while, my grandfather and his two brothers bought a patch of land nearby so that a Sikh temple could be built for people to worship in.  

Around the time of his diagnosis, Dad lost his wife – my mum – who he’d been married to for 49 years. She truly was his soulmate. Without Mum around, I became Dad’s carer. I was forced to grow up very fast. My own career has been put on hold in recent years due to the load I carry at home with Dad. I juggled full-time work and caring for a while, but found myself completely overwhelmed. 

My dad has always been very social. Community is so important to him. To see friendships drop off because people don’t know how to talk to him or support him is really hard, especially within the Sikh community. Dad’s first language is Punjabi, though he does also speak English, and I’ve learnt that it’s very important to speak to him slowly, which really isn’t that hard. I do wish people understood these little things. 

Music has always been so important to Dad. His favourite singer is Mohammed Rafi, a very famous Bollywood singer. Dad loved to sing Rafi’s songs. At parties, weddings and everything in between, he needed no encouragement to take the microphone and start singing. In fact, he serenaded my mum on their wedding day with one of Rafi’s ballads! 

Last year, Dad had a major stroke which affected the left side of his body. His singing hasn’t been the same since, but every now and then, I will still hear him break into song. I love listening to him sing – it reminds me of all those happy memories growing up.  

In recent years, Dad has been overcome with confusion once the sun goes down – which is known as ‘sundowning’. Despite the fact it’s pitch-black outside, he believes that it’s daytime, so it’s very hard to get him to sleep at night. As a result, I’ve had to adjust my own sleeping patterns, often staying awake for most of the night and napping throughout the day. When he sleeps, I sleep. 

Dad uses his sense of humour as a coping mechanism. He often laughs off his forgetfulness or lack of mobility. But sometimes, especially at night, I catch moments when he’s scared and unable to express why. That breaks my heart.

Mohinder feeds a cow from his wheelchair

I’m sharing my story to raise awareness of dementia, particularly within the Sikh community, where it is rarely spoken about. In some cases, it isn’t even acknowledged as a real disease. This lack of understanding has been especially hard since Dad’s diagnosis.  

We need to work on building this understanding, not just so people know how to deal with friends and loved ones experiencing dementia, but also so they’re aware of the early signs themselves. I really think Sikh temples could play a big role in raising this understanding, especially for people who don’t speak English as a first language. 

Every morning, I pray with my dad and recite our morning prayer. In it, we acknowledge death not as something to be feared, but rather accepted. It’s an important part of Sikhism. While dementia has taken so many other aspects of my dad away from him, he has never forgotten his morning prayer. He recites it without help. I cannot tell you how much this comforts me.