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Ricky’s story: "Stigma is often a barrier to accessing support"

Ricky’s gran was diagnosed with Alzheimer’s disease in 2020. He shares the importance of reaching out for support after a dementia diagnosis.

Ricky and his grandmother

Ricky and his grandmother

My gran has lived next door to my parents since before I was born and has always been the family matriarch. We used to watch gameshows together, and she taught me Punjabi. She often hosted family get-togethers with lots of food.

Looking back, there were signs that something was wrong when I got married and moved into my own home in 2017. Gran was becoming forgetful and mixing up people’s names, but as she was in her early 80s, we just put it down to her getting older.

Lockdown stripped Gran of her independence and robbed us of valuable time. She used to go to the temple every morning, and a day centre once a week where she entertained everyone with Punjabi songs, but now she mostly stays inside.

I wish I’d known how quickly dementia can take hold – it’s tough knowing we will never have a normal conversation again.

Over time, Gran’s condition worsened. She was forgetting how to do everyday tasks and neglecting her appearance, and I realised she was showing signs of dementia.

It took a long time to get a diagnosis. Initially, the GP put her problems down to age, and my mum had to be really persistent. Then, in 2020, a brain scan confirmed that Gran had Alzheimer’s disease.

Stigma is often a barrier to accessing support

After Gran’s diagnosis, we were given information on how to access services that could help with things like stair lifts and rails for her bed. But at that time, we didn’t yet need these services.

It felt like the professionals we saw were just ‘ticking boxes’ rather than considering our individual needs. What we needed most was support – but that can be hard to find, and many families like mine simply don’t know where to turn.

In the Indian community, there is a stigma around dementia. This is often a barrier to accessing support after a diagnosis. Gran’s friends are unaware that she has been diagnosed with Alzheimer’s disease and would struggle to understand it. But since I’ve spoken up, some of my friends have come forward to say their grandparents have dementia too.

I’ve called the Dementia Helpline several times

I realise that services are stretched and there are not enough medical professionals available – so I’m so glad Dementia UK’s Admiral Nurses were there to help us. Since Gran’s diagnosis, I’ve called the Dementia Helpline several times. It’s reassuring to have someone listen without judgement. The Admiral Nurses offered practical advice, like suggesting that we buy some colouring books for Gran to keep her mind active. They also reminded me to take care of my own mental health.

My mum, like many family carers, is reluctant to ask for help, but she too has phoned the Helpline for advice. There were several days when Gran rang her at 3am thinking it was morning and wanting to go round. It was good for my mum to be able to talk things through.

I cherish every moment we spend together

I feel like I am grieving Gran even though she is still alive. She doesn’t remember celebrations such as Diwali, which she always loved, and her conversations are the same every day. We still try to watch gameshows together, but she talks to the screen, believing the people are waving at her.

I now have a baby boy, and spending time with him is the best medicine for Gran. She claps her hands and sings to him, and it makes me smile to see the joy in her face.

To me, one of the greatest privileges in life is being able to take care of those who cared for us, and we are all committed to making Gran feel as comfortable and happy as possible. Just giving her a hug or stroking her arm shows her that she is still the person we all love, and I cherish every moment I spend with her.