Younger People With Dementia
If Not Now, When?

Film & Campaign Description

In the UK very few people with young onset dementia (dementia diagnosed under the age of 65) and their families experience a high standard of diagnosis and support throughout their lives. Very few, as the condition progresses, can rely on care that works well for them and their family at home and if an alternative is needed, appropriate care homes are very scarce. (source: Young Dementia Network)

The estimated prevalence figure for young onset dementia, is 92 per 100,000 of the general population. An estimated 7.5% or 70,800 of the estimated 944,000 people living with dementia in the UK are living with young onset dementia where symptoms occurred under the age of 65. It is also estimated that this figure is 50% below the true figure of those living with the condition due to misdiagnosis or non-recording of a diagnosis of young onset dementia on their medical records.

The award winning short film “If Not Now, When?”, starring Bafta Winner Kate Dickie, Jamie Sives and David Carlyle, tells the story of a woman diagnosed with young onset Alzheimer’s disease. It is a hard hitting, absorbing and memorable film that seeks to bring awareness, reduce stigma, and foster understanding of the unique emotional and practical challenges faced by those affected.

The charity was honoured to have worked with the film team through its journey to production. So often people within the sector can be so immersed that they forget to see the humanity which this film so eloquently portrays.

As a charity we would like to utilise this film to raise awareness of young onset dementia in an engaging and memorable way, helping to address the gaps in provision identified by the Young Dementia Network. We aim to provide a voice for those living with young onset dementia, to advocate for the person with dementia, to encourage empathy and understanding within the community, to reduce social isolation and stigma, to increase diagnosis rates through enhanced GP knowledge of the condition, to improve support services and fill gaps in provision, to enable those with young onset dementia to live well within their community for longer with appropriate person-centred support.

A story can make people feel less alone, like they are finally being seen.

Ways we will look to utilise the film will be to:

• Deliver training courses with the film as its core

• Hold a conference with the central focus being built around the film

• Show the film on our website linked to an interactive training app

• Present to NHS England (and wider) to highlight the day to day struggles of those with a diagnosis of young onset dementia and their families to inform strategy and assist in closing the gaps in service and provision for this cohort

• Work with the Young Dementia Network to promote to aid the work that they do in raising awareness, diagnosis and support to those living with young onset dementia

• Utilise as a tool to encourage corporate companies to adopt us as their charity of choice, thereby enabling us to continue to provide and expand upon support services to those living with young onset dementia

• Show the film within marginalised communities to raise awareness, reduce stigma and better inform on support and treatment available

• Push to raise further awareness by reaching out to press for interviews with the writer/director/lead cast to discuss the partnership 

• Approach BBC with the aim of an interview on TV showcasing the partnership/project and further raising awareness of young onset dementia

By using the above dissemination methods the charity is confident that it will spread the message about the insidious damage that a diagnosis of young onset dementia has on not only the person with dementia, but also the wider family and community.