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A Young Carer’s Experience – Nathan’s Story

Nathan Stephens is a PhD student, blogger for Dementia Researcher, and a young carer for his grandmother Margaret, who lives with dementia.

Currently completing his PhD on the Worcestershire Meeting Centres Community Support Programme , Nathan is exploring a countywide approach to scaling up the provision of a psychosocial intervention for people affected by dementia. It is hoped the project will improve the lives of people affected by dementia across the county and provoke further dissemination of the Meeting Centres model.

He shares his lived experiences below, from the personal introduction to dementia that steered his path to academia, to the importance of music for those living with dementia.

Nathan with his nan Margaret, who lives with dementia.

When music is used in a person-centred way, I have seen it transform lives.

What is your personal experience with dementia?
I feel I have always shown a caring and compassionate side, from childhood to present day. But it wasn’t until my Grandad (Ted) got diagnosed with dementia in my late teens that I mobilised these values into something more tangible. I was alarmed at the lack of effort to prevent and alleviate symptoms and engrossed by the possibility to use my interest in sports to provide exercise programmes to improve people’s lives (noteworthy: at this point I had only visited one nursing home). Sufficed to say, I never did get my exercise idea off the ground, but it led me to academia.

It wasn’t a straightforward process to get to where I am today. I didn’t have a good experience in education before University. I failed most of my GCSEs, scraped into college on a Level 1 Sports course and just about passed! I paid to retake my GCSEs and quite literally begged the college to take me back. Thankfully they did, and two degrees, one dodgy knee, and an array of jobs later, I have sort of ended up where I left off, in a roundabout way – working on the Meeting Centres project.

Why do you think music is so important, especially for people affected by dementia?
In the words of Richard Ashcroft, ‘Music is Power’. It can bring anyone and everybody together, but it also can be incredibly intimate and unshared. A means of a new experience or to reflect on past ones. It has shapes who I am, not least visually. After listening to The Kooks at a sleepover in my early teens, I never looked back. The Kooks are part of my identity.

Barring birth, all the key milestones in life are underpinned by music. When you get married, at your funeral, the list goes on. Music is not only critical to people’s sense of self, it’s part of the fabric of our society. Those with knowledge of the symptoms and pathology of dementia know the role that music can play, not only in maintaining aspects of people’s identity, but also developing them.

Have you experienced music being used in a dementia care setting? 
My experience of music in dementia care settings is mixed. Everyone is aware of the benefits, but playing the same CD on repeat day after day isn’t beneficial at all. When music is used in a person-centred way, I have seen it transform lives. You can just see their quality of life elevate. Especially the live music events that engage people and give them roles in the creation of music. Music has always been a way of life in my time as a carer and not a way of working. I like to think about my music-related habits and that instantly makes me appreciate just how different one day is to the next.

Musical memories with Nan - Personal music for dementia

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My personalised playlist

Bernie – Bennie Hill

If you ever witness one of mine and my partner El’s karaoke evenings, you will hear this diamond! Listening to music brings me so much happiness but having a go yourself brings me even more, even if the song lyrics are a little morbid.

Nobody Comes Round Here – Lucy Rose

This takes me to my first sit down gig which was also a first date. To be honest I wasn’t much company, I was just lost in the sounds of Lucy and the supporting string quartet. It was incredible. I regularly listen to this album three times in a row, it’s that timeless.

Trance Music

I remember playing in a park with my dad whilst on holiday by the sea, and then getting in the car on a hot summer evening and the radio playing some absolute trance anthems (of course at the time I didn’t know what trance was). I now know what trance is and LOVE IT! I own more trance CDs than any other genre, fuelled in parts by the fact trance albums tend to include 4 CDs – bargain!

The Kooks – Petulia

This is my ultimate Kooks song, from an unreleased EP called RAK. Nothing beats it!