‘Nobody is not a self, nobody is an object’ Nicci Gerrard, ‘What Dementia Teaches Us About Love’
I have very lucid memories from visiting my Grandma Sheena in a nursing home. Mornings spent sitting as she sat looking vacant at some unknown world in front of her, with an occasional groan and a cough, always with a look of pain on her face. There were moments however, there is for everyone, where a look of recognition came across her face, her hand squeezed mine in a reassuring way and a soft Glaswegian laugh came from her throat. A snapshot of the person who was still there. I wondered what her experience was of this – were there memories flickering inside her, bringing her past into the present? And was my presence a comfort to her, or something that she didn’t notice at all.
‘The Sea’ is a deeply personal film written during this time, imagining the experience of someone with dementia, putting the audience into their world as memories and characters from their lives converge into one setting. My aim was to humanise the disease, taking it away from simply an exterior of old age and recognising the person within them – the lives they have led and the memories that are still inside them. The film not only focuses on Jenny living with the disease, but also the effect it has on her family and the people who care for her. This was inspired by my Grandad Tony visiting Sheena every day – sitting next to her, laughing with her and making sure she knew he was there. This became his whole life and sadly he passed away not long after Sheena. The film is dedicated to both of them.
While making the film I was struck by how many people had experiences of Alzheimer’s, sharing their stories and perspectives on caring for a person living with the disease. I’m eternally grateful to Anna and Russell, David, Rhoda and the rest of the amazing cast and crew for giving their time, energy and experience to the project. Everyone added to the richness of the film we were making, creating a piece made up of everyone’s experiences of family and love. Touring the film around festivals worldwide also brought home to extent of the disease. I had countless people come up after screenings to talk about a friend or family member who had been living the disease, sharing their stories and experiences. These moments were very special, seeing how the film connected with audiences and sparked conversations around the disease and the families living with it.
This year it has been awful hearing stories about the terrible effect Covid-19 has had on care homes and those living with Alzheimer’s. In the UK a quarter of Covid related deaths have come from people with the condition, while charity and research funding has faced devastating cuts. On top of this are the missed family visits due to the need for social distancing. Routine and connection are so important – the daily visits my Grandad made to my Grandma were so important in helping her feel safe and loved. I can’t imagine how difficult it has for families and I hope through the film’s release we can draw awareness to the need for more support to the community.
Seeing the heartbreak and damage dementia wreaks on a family created a desire to change perceptions of the disease. That’s why I’m very happy to partner with Alzheimer’s Research UK to release the film, driving awareness and attention towards their fantastic work changing attitudes through their ‘Share The Orange’ and their mission to bring about a life-changing dementia treatment by 2025. The film is ultimately one of hope and my wish is that is encourages people to look beyond the statistics and the disease to the people living with Alzheimer’s and the vibrant lives they continue to lead. As Nicci Gerrard says in her book ‘What Dementia Teaches Us About Love’ – “nobody is not a self, nobody is an object’.