Real stories

‘Making a new language’: How music and culture can widen the conversation on dementia

My mum and dad were both born in Jamaica.  They came to the UK as part of the Windrush generation with my elder sister Shirley, who I am very close with.

Reggae and ska music from the Caribbean underpinned my upbringing. It was always played at family gatherings. As a young man, I had a wide circle of friends, and we were in and out of each others’ homes with no consideration of race, colour or creed.

As time passed, we went to youth clubs, where the main music was reggae. I remember Marcia Griffiths and Bob Andy singing ‘Young Gifted and Black’, and ‘Liquidator’ by Harry J Allstars, Toots and the Maytals. But not just reggae – The Jacksons, Carol King, The Beatles, The Rolling Stones. Great music.

As kids, we were always into the latest fashion. In the skinhead era, we wore Ben Sherman shirts, DM boots, Harringtons, a Crombie coat.

I always find it interesting that skinheads are sometimes associated with racism. In my community and the world I grew up in, I never saw or experienced any of that.

I was conscious of my colour, and the mixing with other colours was part of the beauty of my youth.

A new consciousness 

When I was in my late teens I began to read. I read amazing books. By Angela Davis or Malcolm X. I became aware.

Occasionally, people would joke, ‘What’s a Black man like you doing with a Scottish name like Ferguson?’ I didn’t take issue with it, but I did become curious about my name and my heritage.

When I was reading about Africa, there was a name – Amanze – which means 'the quality of a king’. And so I adopted that because it identified me as who I was, culturally. When I went into the music industry, Ronald Amanze became my pseudonym.

There is blatant racism in our society. Often, I think what leads to racism is cultural misunderstanding. People seem to misunderstand me. I am energetic and passionate. But that behaviour is not the norm for certain parts of England. And I wonder when they see I am Black, do they interpret that more negatively than they would normally?

Dementia, memory and Black History 

History has become much more important to me over the last few years.

I had a stroke, and sustained a brain injury. Two years later I was diagnosed with dementia.

With dementia, people began to talk a lot about memories. I realised I didn’t have a lot of memories – not of growing up. So now I call my auntie in Jamaica and ask her about Jamaica and about my mum and dad. I even wrote a song about it called ‘Black History’. 

Press play on the video below to listen to Ronald's song, 'Black History':

When I consider my heritage, it saddens me to think about what Black people had to go through. I know the exclusion that Black people have felt.

Over the last few months, during coronavirus lockdown, I feel very strongly that I have been culturally misunderstood by the council, and discriminated against.

They are a big bureaucracy, and they have power. And I don’t. And it leaves me feeling threatened and feeling constantly anxious. There is a real need to educate people about dementia. Alzheimer’s Society has been amazingly helpful during that time.  

Getting my diagnosis was sad. But it has galvanised me to make the best of my life and live a meaningful life. I want to live every moment, and address incorrect notions. 

I am not frail. I do not need support all the time. Sometimes, I might need support, but I am more likely to need empathy and encouragement and understanding. 

The power of talk 

Some things make people uncomfortable and dementia is one of those things. If you have dementia, it is beautiful to have real conversations. But it feels awkward. So in a way, we need to be inspired to talk about dementia. 

I came up with this idea about encouraging people to talk about dementia, but through music and arts and poetry. Sabrina Jantuah and Cheryl Elliott from Alzheimer’s Society motivated and encouraged me to progress it, and I am so grateful to them.  

People began to send in their submissions by email. Just a few at first, and then dozens. Something remarkable happened. It became called “Talk Dementia” and was moved to Twitter.  

Now there are hundreds of entries. It is growing like a tree. It has sprung all of these branches. 

Connecting through culture 

I am conscious of my language. I stumble over words. But with poetry and music, I feel comfortable in the way I communicate and express myself. 

In art, I cannot make a mistake – I am making a new language

There is no restriction to my conversation. I can be expressively real and free. I can mix words with African drumming and reggae and ska. When I am at my lowest, it is the very definition of social prescribing. 

I see Talk Dementia as like a tour bus. There is a mainstream bus that visits lots of areas. But there is also our bus, and it goes to the areas that the mainstream bus doesn’t stop at – especially poor or marginalised communities. It makes people feel better through social prescribing.

Talk Dementia gives me freedom of expression where I don't have to tiptoe around the conversation. I feel grateful and excited that I can build on something. This will keep me active and in line with a world that I want to be in. 

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Ronald’s project can be visited at talkdementia.org