Why I’m using my radio show to derail the stigma surrounding dementia

Dilse radio presenter, Deep Rajah, has seen his father change from being a strong and intelligent man, to someone who has become dependent on others following his dementia diagnosis. What’s made this harder for Deep to cope with is the stigma associated with the condition within his own community. To overcome this, Deep’s using his radio show to shine a spotlight on dementia and ask the questions that are often left unspoken.

Within the BAME community, especially the Asian community, dementia has long been a condition that we do not like to talk about. This is partly because of the fear dementia stirs up and partly because many of us wrongly feel ashamed that someone in our family has dementia. It can also be the case that we do not know what to do about the condition, so we are embarrassed to go to the doctor to seek help.

But we cannot go on like this. That’s why I have decided to talk about dementia openly on my show on Dilse radio and ask the questions that people dare not ask, like: ‘My dad has dementia. Now what?’

From my personal experience, you never know what to expect from a person living with dementia from one day to the next. Sometimes my dad is great. He will sleep well through the night, and in the morning, he will wake up happy looking forward to his breakfast.

Other days, he sleeps badly and will wake up in the middle of the night, thinking it’s time for breakfast. Often when he wakes up and gets out of bed, his coordination is slow because of the damage dementia is causing to his brain. Dementia is making his reactions slow down. He often stumbles around and will fall to the floor, it’s always a shock when I find him this way.

At times, I am moved to tears wondering what happened to the strong and intelligent man who I have known most of my life, who has become so dependent on others that he cannot even stand steady. Signs of his dementia have started to get worse, everyday tasks like shaving and washing have become a mystery to him.

‘How do you shave?’ he will ask. ‘Why should I take a bath, I may get stuck under the water?’ is another one of the fears he expresses. I am constantly convincing my dad not to worry, to try to get dressed as much as he can independently, so that he continues to use what brain power he has left.

But then the reality of the situation begins to bite and being from an Asian community, in my experience it is expected that I must handle and cope with my father’s dementia single-handedly. You see, in my community, we still have this stigma that no one should talk about dementia. It can be seen as a sign of weakness, a sign that we cannot cope with our own family and an excuse for people to gossip about us, especially my dad. ‘What will people say if they find out dad has dementia?’ ‘Will they still talk to us?’

These are just some of the worries that I have. Up until now, I have just about coped but now I am finding it a struggle to manage my dad’s dementia as it has progressed, along with managing a full-time job.

So, I decided to talk about dementia on my show, addressing the stigma and the impact this condition has on families like mine – something I’m sure many of my listeners will be able to relate to.

I’ve also interviewed experts and supporters from Alzheimer’s Research UK, to highlight the need for more research into dementia and to raise awareness of the condition. It’s essential that we improve understanding of dementia, if we are to defeat it.

I’d ask you to tune into my show and become part of the conversation. I welcome you to call in and tell me about your experiences of dementia. You can contact the studio by phoning 020 7501 1540 or emailing msg@radio1458.com

I look forward to hearing from you. Together, we will break down the stigma surrounding dementia and get closer to a cure.