Real stories

We need equity in dementia support for everyone

My Nani Ji (my maternal grandmother) was such a wonderful being and instrumental in raising me. She expressed her love through delicious, authentic Punjabi food and kindness. 

Before she was diagnosed with Alzheimer’s and vascular dementia, this wasn’t something we knew much about. 

Unlike my grandparents I was born and bred here in the UK, so you might think that I would have been more aware, but I really wasn’t.

When we talked about dementia within the community, people often said things like, ‘Oh it’s just old age, these things happen’. 

There’s a limited understanding about what dementia means and how it manifests in various ways, which can be quite tough.  

My Nani Ji could have a conversation on the phone and say, ‘I’m fine. How are you? How are the family?’ However, we began to notice subtle changes – when you’re closer to it, the reality is so different. 

As a carer, you have to become aware of so many things, like the complexity of memory and how it is lost. 

Simple things like eating and drinking had to be carefully monitored and encouraged, because my Nani Ji would say she had eaten or drank water, but she had either forgotten or lost her appetite. 

Learning that she was seeing the world differently meant we had to adapt as she changed. 
 

Speaking up and asking questions

At health appointments, if English isn’t your first language, you’re more likely to just accept advice without question – especially from medical professionals, held in high regard. I know that if we had not been with her to speak up and ask questions on her behalf, she would not have received the best support available. 

During the last year of her life, she often regressed and shared many happy memories, particularly when she was a young woman back in Punjab, India or the early days of coming to the UK. 

Throughout her life, my Nani Ji always kept her hair neatly plaited or tied up in a bun. She understood that in this country that wasn’t the norm. But during the latter part of her life, she became fixated on how hair should be kept. 

When I came back after two weeks from travelling in Tanzania and summiting Mount Kilimanjaro, I was so excited to see her again. 

But she wasn’t aware of the time that had passed. The first thing she said to me was, ‘Why is your hair out? You should tie your hair up.’ She was sharing her wisdom, as this core belief was very valid to her. 

Need for better understanding

Health services should ensure staff have a better understanding of people from diverse backgrounds, and this needs to be nuanced. 

I am from a Sikh background, however not baptised yet. The prominence of faith can be very important to an individual and needs should be catered to accordingly. It’s important to ask questions to best support them. 

For example, dietary requirements can vary, some may need a lacto-vegetarian or plant-based diet. This is particularly important in a care or hospital setting, as my Nani Ji would never have eaten meat, fish or eggs. 

Organisations need to involve people from local communities to gain understanding in an equitable way.