School aged children and grandchildren of people living with dementia have taken part in a series of videos speaking frankly about what it is like having a relative with dementia, in a bid to help other children better deal with the condition.
The videos are part of a new classroom-based dementia education program aimed at children in years 5 and 6 at primary school.
UNSW research psychologist Dr Jess Baker, who received funding from the NHMRC/Dementia Collaborative Research Centres to design the program, said the videos are an important tool in breaking down stigma and raising awareness of dementia.
“I would love to think that we can get to a point where by the time every child leaves primary school they will know about dementia and understand that a person with dementia is still a person,” Dr Baker said.
“That when a child’s loved one forgets who they are, the child will know ways to interact with them, know that it is no-one’s fault and that you don’t need a good memory to have a good time.
“Or if they see someone with dementia in their community that may be confused, they won’t fear that person, but embody values of respect and kindness. Rather than changing attitudes and behaviours, which is pretty hard to do, let’s create attitudes and behaviours.”
Jack, 9, whose grandmother has dementia, and who took part in the video series in the hope he could help others, said children can deal with the challenges that come with having a relative who has dementia.
“I’m not amazing, I think kids can deal with it. It’s not amazingness, it’s kindness,” he said.
Grace, 13, who also took part said she, too, wanted to help.
“I think it is really important for people to know about dementia, because it has been hard for me and I wanted to help,” she said.
“I really liked talking about it because we don’t often speak about grandma. It was good to speak to an outsider who won’t judge us. If you speak to a friend about it, they might think it is weird.”
The videos are part of a classroom-based dementia education program being developed by Dr Baker and a team of teachers, people with dementia, children and academics for children in years five and six. It features the videos, along with seven short modules, covering topics including: what causes dementia; how does it feel to have dementia; how can we keep our brain healthy, and what happens in an aged care facility.
The entire program is told through the story of Ollie, Ruby and their Pops. Each module is accompanied by a class activity, such as an interactive brain, role-play or drawing.
The program is evidence-based, developed, in part, from findings from focus groups with children, people with dementia and their relatives. It is due to be piloted in two Sydney schools from November. The intention is to then roll the program out in schools across the nation from early 2016.
The videos are a joint project between Alzheimer’s Australia NSW and the Dementia Collaborative Research Centres.
Alzheimer’s Australia NSW CEO The Hon. John Watkins AM said the video series was a wonderful way to raise awareness of dementia among people of all ages.
“These children are so articulate, so disarmingly honest and, really, they are amazing to be so generous in speaking out in the hope of helping others,” Mr Watkins said.
“These just go to show that children are impacted when a relative develops dementia.”
The videos will be officially released at the 9th National Dementia Research and Knowledge Translation Forum in Sydney on Monday and can be seen at Alzheimer’s Australia’s YouTube channel.
The forum coincides with Dementia Awareness Month, which runs throughout September. This year’s Dementia Awareness Month theme is ‘Creating a Dementia-Friendly Nation’. World Alzheimer’s Day is on Monday 21 September.
Alzheimer’s Australia will host a number of events throughout the month. Visit www.fightdementia.org.au for details of events near you. Dementia Awareness Month 2015 is jointly funded by the Australian Government Department of Social Services and the NSW Government.
Each time I have seen this video I have been astounded at the courage and empathy displayed by the children. If more children were able to view it in the classroom and then have a discussion with their peers the understanding of the disease would spread. consequently the associated stigma would gradually disappear. A follow-up curriculum module in the PDHPE section in Secondary schools would reinforce the knowledge of dementia.