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Why I was right to make a documentary about grandad’s dementia

When Tom Sivyer was diagnosed with vascular dementia his grandson Dominic did something a lot of us wouldn’t think of – he started filming him.  What followed was three years of footage which then formed the basis of a BBC commissioned documentary – Grandad, Dementia and Me.  It was screened recently – and if you can it is well worth a watch.

The film doesn’t pull any punches, and is a difficult watch in many places. One particularly moving scene sees Dominic moved to tears by his Grandad’s plight, while Tom, a man of a certain generation, stares back nonplussed and asks him what all the fuss is about.  The decision to film came naturally to Dominic who had a very close relationship with his grandfather, and his grandmother Pam.

Making sense of Dementia

“I decided to make a film because I was trying to make sense of the illness that was making my grandad totally powerless,” he explains. “It was a very challenging time for me and my family and especially for him, so it was a way of gaining control over the situation. Filming was something I had done with him as a young boy, so it felt totally natural.”  Dominic had begun the filming as he wanted to document what was happening to his grandad. But what started off as something to do after he had graduated from an MA in documentary film making at University College London, took on a life of its own after the BBC commissioned him to make a full-length documentary.

The film works on many different levels – you see Tom struggle to understand what is happening to him, the reaction it provokes in Dominic, and the discussions that follow among members of the family.  It also serves as a story about the enduring love between Tom and Pam, and the strain that his condition places upon that bond – firstly showing the difficulty she has in coping as well as Tom’s added confusion that he can’t be with his wife.

Opportunity to share experience

Speaking to Agespace, Dominic reveals that the film had stirred a strong reaction among viewers. “I was totally overwhelmed by the responses that I have had,” he says. “I have had hundreds of messages, many from people who are younger than me. I think it’s provided a platform for people to share their own experiences.”

At times, the documentary was an uncomfortable watch, and you wonder if some viewers had felt that he had exploited his grandfather’s condition?“That was something I was prepared for and those sorts of discussions were inevitable,” he says. “I personally haven’t had any criticisms, but members of my family have had some, around him not being able to give his consent. I checked with him continuously and he has been very positive and he feels it’s helped explain what is happening to him and allowed him to accept his condition.

“He is more stable now. He has got something to see now, and I think he actually finds it quite comforting. “He isn’t getting second hand information. I didn’t expect that, but I think it’s been quite therapeutic for him. There were some people in my family who were unsure about it.  “The beauty of it is that it reveals itself as it did for me at the time. I was filming in the present tense.” The film highlights both the difficulties and importance for families in having discussions around ageing – you suspect there are millions of other people going through exactly the same thing as Dominic and his family.

So what lessons does he think the family learned?

“If there was a criticism it was around the ‘bad decisions’ we took. I think ultimately my grandad wanted to be with his family,” he says. “Because of the state he was in, it was very difficult for him to be around. You definitely need to have people around you as much as you can and not to be isolated.”  He also stresses that all families are different and each need to find their own way of handling these kinds of issues.  “I don’t think there is a lot of support for families, but I’m quite wary of telling people what to do and giving advice. It’s always such an individual thing.”

At its end, the film sees Tom and Pam reunited following her decision to move from the family home into a gated community for older people.  And Dominic reveals it wasn’t just a happy ending for the cameras.“It’s very positive, they are in a very good place, and they are happy being back together,” he says. “I think he is very calm and feels quite settled in this new environment. She has got support around her, and I think that’s made a tremendous amount of difference.”

Click here to watch a short extract of Grandad, Dementia and Me.

Visit our section on Dementia here.  It’s full of advice and help, organisations and resources you might find useful.