Marie Alford, Head of Dementia Professional Services at HammondCare, recently attended the screening of the film Everybody’s Oma – a documentary produced by Jason van Genderen about his mum’s battle with dementia. The film also featured a Q&A session at the end where the audience could ask questions about the film.
Everybody’s Oma is a raw, deeply personal and gently funny (yes!) account of the van Genderen family’s last few years with Jason’s mother, Hendrika, known affectionately as Oma.
One of the strongest messages I took from Jason and Megan van Genderen’s wonderful documentary about dementia, Everybody’s Oma, is to seek support – even if we don’t see ourselves as ‘carers’. Because that support means you are not only looking after the person you are caring for but yourself as well.
By 2030, the Australian Institute of Health and Welfare predicts, 500,000 Australians will be living with dementia.
But we are not alone: we have excellent support services in this country for people living with dementia – and their carers.
An equally important message I took away from Everybody’s Oma and the subsequent Q&A sessions with the van Genderens was that we can all remain engaged in things we find familiar. Dementia doesn’t mean family traditions need to stop. Or the fun we have together. Oma showed me that on the big screen with her cheeky smile and wicked chuckle.
I never had the privilege of meeting Oma – but I feel as if I knew her – and I know am not alone in that.
I first saw Everybody’s Oma at the Sydney Film Festival in June and it affected me strongly. Along with the team at HammondCare I jumped at the chance to be part of some special screenings in August, incorporating Q&A huddles with Jason and Megan after the show. Everybody’s Oma reinforced for me why aged care work is both so challenging and so rewarding.
This film tells of love, heartbreak, intergenerational care, and family – and the role we can play in capturing those stories.
Jason takes us into his home to meet his family; his mother his wife and his young children. Oma enjoys her role in the documentary and it shows, particularly, the endearing relationship with her grandchildren.
As Oma’s dementia changes, the camera pulls back and we hear more from Jason and Megan about the challenges of her care. What resonated for me was that Jason and Megan didn’t see themselves as carers. They were family – doing what family do. A story we hear all the time. A story that sometimes means we don’t ask for help.
Everybody’s Oma draws deep and varying responses from viewers, but it is profoundly impacting for many of those who are caring for someone living with dementia at home.
At the after-screening sessions, people wanted to share their own stories.
As Jason commented: “The more we talk, the more we learn, grow and empathise.”
The audience wanted to understand what it was like to have the cameras filming every moment. Jason reflected that for his family the camera is part of their daily lives and Oma – a natural-born performer.
But they balanced this against three core principles; were they filming with love, would the content help the understanding of caring for and living with dementia, and would this be something Oma would consent to be involved with.
The family reflected on their sense of guilt in not being able to provide ‘enough’ care for Oma and for each other. There are moments in the film that show the raw emotion of families under pressure.
A sense of guilt is common, because we feel we can’t do enough, because we feel exhausted, and because, at some stage, we realise we need more support than we give alone.
Carers need to care for themselves, other family members, and their loved ones with dementia.
In the Q&A that followed the film, some audience members talked about their own experiences. Every experience is different. Oma was mostly happy and amenable, she naturally liked to please and be pleased. For some people with dementia, though, the changes it brings can be painfully confronting, both to themselves and those that care for them.
Dementia can impact the ability to understand the surrounding world. As caregivers, as a community, we need to meet people where they are – rather than try to change them.
Changes in behaviour may be the result of distress or perhaps symptomatic of a changing medical condition but there is no template. Everyone will experience dementia differently.
Services like Dementia Support Australia can assist people with dementia, families and carers to understand the causes of behaviour and provide individually-tailored solutions to support.
Jason and Megan wanted to care for Oma at home, but eventually, they needed to find an aged care residence. The home was no longer safe for Oma or her family.
Finding the right aged care home takes time and I cannot stress the importance of learning about residential aged care before it’s needed and working with the provider for the best possible experience.
Jason told us the motivation for Everybody’s Oma was to broaden all these conversations.
Jason and Megan want to give voice to carers and people living with dementia. They want to share their story and to inspire audiences to continue the conversation in their communities.
Jason van Genderen will be speaking about letting go bravely with love and leading a masterclass on creating inclusive experiences at the International Dementia Conference: A Brave New World on 8-9 September at the Hilton Hotel Sydney.
No one caring for a person living with dementia needs to be isolated or alone. Dementia Support Australia and similar services can connect you to the best available support and be on hand to assist with advice 24 hours a day.
We offer proven advice, support and skills to improve the quality of life for the person you are caring for – and yourself – wherever you live.