The Carers Support team in West Sussex have given the Dementia Trust a progress report on their Disruption Award project. The project team piggybacked onto an event in Crawley in November, when carers from South Asian backgrounds who are looking after someone with memory problems and dementia got together for a Bi-Lingual Dementia Navigator project. Nearly two dozen carers and their families attended providing range of perspectives and opinions. The overwhelming theme from conversations was that families tended to hide that someone has memory issues or dementia. They did not talk about it and were reluctant to get help for fear of shame if neighbours, friends or family found out. There were feelings of sadness and frustration amongst those carers that so many people looking after someone with dementia miss out on support due to pressure not to talk or share. 

The Disruption team took these themes along with others already gathered and discussed a storyboard with the film-maker (www.crawleyfilm.org) hoping to have the filming completed in December. Unfortunately bad weather and the carer’s illness delayed things. They reconvened in early January to plan. Though a number of families want to remain part of the project and continue to help shape the story, to be filmed was too big a step for them.

Amy Weaver, who is leading the project told Trustees, “It was not surprising, bearing in mind that this shyness about dementia is at the heart of the project, so we already had a back-up plan. We have managed to secure the support of an actor who is also a South Asian dementia carer and happy to be involved. The team, film makers, bi-lingual carer support worker, actor and four other family carers met to start to develop a script which could be used for filming in February.

We have set a launch date of 18th March to showcase the film, inviting carers who have been involved in making it along with community leaders and will be inviting along with some media. We are mindful that Ramadan starts on 22nd March, ending 21st April so are eager to wrap from 18th March or we will not be able to have the celebration event until late April.”

If anyone would like to attend the launch please do let us know. If you need any more information then please do not hesitate to contact Amy Weaver