Emmerdale’s depiction of dementia at the British Soap Awards 2016: John Middleton interview

Alzheimer's Society has been advising on the scripts and visiting the set to ensure Ashley's symptoms, diagnosis and the progression of the condition depicts a realistic representation of someone living with dementia. John talks about his nomination and his experience so far.

You’ve just been nominated for the British Soap Awards, how does that feel?

It feels great, it’s a lovely feeling. I don’t think I’ve got any chance of winning (laughs) but it’s a lovely thing to be nominated for. My story is gaining a certain amount of prominence in the show which is great. For me personally it’s fantastic, but also I think discussing the issue and the condition of dementia is fantastic as well.

How important is it for Emmerdale to tackle the issue of dementia?

It’s incredibly important, but what is more important than that is to tackle it properly – to get it right. It’s all very well confronting it, but we might do it in a way that’s exploitative, but I sincerely think that we’re not. I’ve just come from meeting a group of people who are carers and people who have early onset dementia – for our story these experiences are absolutely invaluable. I always thought our story would come from real people with dementia’s experiences, rather than us trying to shoehorn them in the other way round. Some of the stories I heard were amazing, and harrowing, and sometimes hilarious. There is light and shade. If I’m taking anything away from the meeting, it’s the stoicism in the face of adversity. The people I’ve met cope amazingly.

What’s the reaction been like of your portrayal of Ashley’s diagnosis?

It’s been positive, and I think people do think we’re getting it right. The main thing I’m noticing is the number of people that are coming forward and saying, yes, my grandmother, my auntie, my mother, my father, my uncle had dementia, or has dementia of various sorts. The further we get into the story, the more that is happening so you begin to realise what a huge issue this is and it’s getting bigger.

How have you approached playing Ashley’s dementia?

In the first place I did a lot of reading and Alzheimer’s Society, in particular, was very helpful with that. The pamphlets they produce for each area of dementia are incredibly succinct and useful. That sort of initial grounding has been good because I was very much aware when the story was first pitched to me, we were just talking about dementia and we weren’t talking about the specifics.

As you meet people, there’s another aspect that occurred to me and came to the fore – each person’s dementia is as different as their personalities. You can’t generalise about it because it’s so different for each individual, and you can have good days and bad days. Particular with the type of dementia Ashley has, which is stroke related vascular dementia, you can have these sudden drops, but you can then plateau for a while. I’ve just been chatting to a chap who does have vascular dementia and what I was struck by was his self-awareness about his condition which I thought was quite amazing and I wasn’t expecting that.

 

Is there anything else that you’ve learnt about dementia that’s surprised you or that you didn’t know before?

There were certain things I knew before and other things I didn’t. The thing that we all know about dementia is memory loss, but I didn’t know about things like spatial awareness. How, for example, you’d have difficulty negotiating steps because your appreciation for the height of steps goes. Or the fact that you should never really put a black floor mat in the house of a person with dementia because it looks like a black hole, or that you should really cover up mirrors because that person could look into the mirror and not recognise the person that’s looking back and be frightened. Things like that I found really surprising.

Has working on this story affected your perceptions of dementia?

Yes, yes it has. I’m less worried than I might have been before about meeting and talking to people with dementia. To make a big generalisation and say I understand it more is a bit crass, but never the less it’s happening. I remember thinking and saying to a colleague before a visit to a home – ‘look when we get there we’ll be meeting people with dementia, it will be nowhere near as upsetting for us as it would be for their families because we’re seeing them as they are and their family and friends remember them as they were.’ Indeed with the care home we visited, not only was everyone very happy, but also very lucky to be in that home because the standard of care was absolutely lovely and the people there were genuinely drawn to the job as a vocational occupation

Thank you for your time John, It sounds very much that even though you’re playing it as an actor in a storyline, it’s totally affected you maybe even for the future.

Oh it certainly has and I’m learning lessons to take forward. From the moment the idea was pitched to me I thought ‘yes let’s do it’, but we’ve got to get this right – particularly in a show like ours, which can appear over the top because it’s a drama.

Public voting is now open for the British Soap Awards 2016 here. Votes for John will help to raise awareness of dementia and recognise the challenges faced by people affected by the condition as portrayed in his performance.