BY THE year 2050 it is predicted dementia will affect up to 60,000 people in Northern Ireland.
Now a new documentary screened today for the first time looks at the lives of four people diagnosed with dementia and charts their experiences.
The new film by Erica Starling Productions, supported by The Social Change Initiative, is being launched at Queen’s Film Theatre in Belfast.
The families who took part in the production, as well as organisations supporting people with dementia, the Commissioner for Older People for Northern Ireland, politicians and senior civil servants are set to attend the screening and a question and answer session.
The film, also available for viewing above, captures moving experiences as Raymond, Stephen, Jim, Jo and their families see their lives changed by dementia.
Raymond received his Alzheimer’s diagnosis four years ago by post. But the film recounts the support he now receives from his family and the services available near his home in Belfast.
In rural Fermanagh, accessing support can be more difficult. Stephen, diagnosed with dementia two years ago at the age of 57, says in the film: “We have no awareness courses, very little help at all…Once you’re actually in the system, you hear nothing. Dementia NI is my whole release valve.”
It was as early as 2008 that Jim’s family noticed a change in his behaviour. But when he was first diagnosed, his wife Emily had no support in dealing with what to her was an unknown disease.
“We got a diagnosis and that was it,” she says, “I had no social workers, no OTs, I had no community psychiatric nurse. I had nothing. So I knew nothing.”
Jo is a retired nurse, diagnosed with dementia almost a year ago. She says of her symptoms: “It’s very difficult to describe. It’s as if your head is empty and at the same time it is pounding…and the tiredness that goes with it, the tiredness is awful.”
Dementia diagnosis faces a range of challenges in Northern Ireland. The experiences captured in the film reflect many of the continuing concerns, including issues with follow-up provisions after a diagnosis and inconsistency in services.
The film charts how some of those interviewed found routes to services and benefited from support.
But while progress has been made, the documentary also demonstrates the need for continued movement towards a common dementia service model that gives people certainty and ensures they will get the right support at the right time wherever they live.
A new Dementia Care Pathway has been developed by government but has not been implemented.
Director of the Alzheimer’s Society in Northern Ireland Bernadine McCrory said: “I welcome this film as a powerful and poignant portrayal of the challenges faced by people living with dementia in Northern Ireland. The film captures the painful journey for families, but also shows that help and support is available. People can live well with dementia, but we need services that support the person and their families, regardless of their circumstances or where they live.”
Atlantic Philanthropies is a global foundation that made grants in Northern Ireland for 23 years, before closing its Belfast office in 2014.
The Atlantic Philanthropies supported several organisations working with people who have dementia to develop dementia friendly communities and hospice services, to enable people with dementia to advocate on their own behalf, and to support research into dementia care.
In 2013 the Atlantic Philanthropies and the Northern Ireland Executive also signed up to a joint initiative, one strand of which related to dementia.
The film – Our Lives With Dementia – was commissioned by the Social Change Initiative (SCI) an international, not-for-profit organisation established in 2015.
SCI aims to improve the effectiveness of activism for progressive social change. SCI also oversees the government grants awarded by The Atlantic Philanthropies in Northern Ireland.
Angela Hodkinson of SCI said: “In the last 10 years there has been a big focus on dementia in Northern Ireland. Committed people in our health and social care service, and in the voluntary and community sector, have been working to improve dementia services.
“And what’s more, people with dementia and their families have raised their voices, telling us what matters to them and how it really is to live with dementia – after all they are the ones with first-hand experience.
“The Social Change Initiative wanted, through this film, to give some of those people another opportunity to do that – to tell us what it’s like to live with dementia today in Northern Ireland.”
SCI said it was grateful to the families that participated in the documentary, with support from Dementia NI and the Alzheimer’s Society. It is hoped the film will advance the debate and build wider public awareness of dementia.