When a person has dementia, a whole family is impacted. Families are living with dementia, and often there are children within these families.
Children of a person with dementia, grandchildren, nieces and nephews or even children of a significant relationship to the person with dementia.
Over 400,000 people are diagnosed with dementia, and a large portion of these people have children in their lives.
If these 400,000 people with dementia, each of them have a relationship with four younger children – that’s nearly a two million children and teenagers who are impacted by dementia in their family.
Today’s children are tomorrow’s decision makers. Therefore, it’s important to include tomorrow’s decision makers in the discussion today.
So it was fitting that at Dementia Australia’s “Be the change” conference had a youth panel discussion in the name of inclusion.
Facilitated by Assos Prof Alan Duffy, the panel spoke to three young Australians whose life was impacted by dementia in some way or another.
The panel featured Hamish, aged 18, Ashlyn, aged 10 and Isao, aged 13.
These children within families are witnessing what dementia is, how it impacts a person, how it impacts other primary caregivers within a family. And they may take on the role of caregivers themselves.
As seen during the panel, children and teenagers are often intuitive on what dementia care could of should be.
Ashlyn, whose father has dementia, wishes to be a work in the health sector, telling the audience that “I like caring for people”. Living with her father was the inspiration for such a choice.
If she were to become a doctor for dementia she hopes to “find a cure”.
Isao’s stepfather has dementia, and Isao believe nanotechnology could be a future solution to dementia in terms of a cure.
“Because dementia is inside in the brain, nanotechnology focuses on robots on a tiny tiny scale, I thought if we could somehow have those tiny robots go into the brain and help the thought go from one neuron into another, like building a bridge, then thought would never be lost”.
Hamish is finishing Year 12, here on his last day of school. His maternal grandmother and paternal grandfather both have dementia. His mother is a carer.
Hamish’s grandmother has had dementia for 10 years, living in an aged care facility five minutes away from the family home.
“The facility has played a huge role in supporting mum, but it’s also been not enough”.
“Mum’s needed to get extra help to make sure her mum is fed at the facility because there’s not enough staff. Most days she tries to make a visit for at least one meal.”
“Basic thing is having enough staff to have the time to sit with any elderly person and make sure they have enough food.” Needs more staff….for feeding”
“Despite this, the centre has been good in that every Saturday there is music, and that is really therapeutic for my grandmother”.
Ashlyn says that she spends a lot of time “drawing and colouring together” with her dad, because “he loves it and so do I”
“It would be nice to see people doing more, if someone in their family has dementia, I think it would be good to see families doing more together”.
Something that Ashlyn is showing is that although she is undoubtedly spending time with her dad, what she is doing is also a form of care.
Isao says he would find support in the simplest of things, “something that is very basic and simple that would be helpful would be just having someone to talk to, whether that would be a parent or a carer, a specialist. If you had any questions, you could just ask them.”
Hamish agreed saying, “I’m very lucky with my younger brother, mother and father all have a pretty good idea what it involves having someone with dementia, and supporting each other.”
Ashlyn says that “talking to my teacher, my mum, my brother as well” helps her.
“Talking to people about my dad. It’s helpful when people know and understand, because if people I want to talk to don’t know it is, what it means, it’s hard to talk to them about it”
Admitting that she doesn’t talk to her friends at school about it, Ashlyn does get support from her teachers.
Isao says that “my friends have their own lives, I just keep it to myself. I have my mum and little brother to talk to”.
“I understand what’s wrong and what going, there isn’t a cure. I don’t want to get caught up in school with teachers and peers. I don’t see a need for everyone to say ‘aww I feel bad for you’”.
“Let’s focus on what we can do about it. Don’t be all negative, be positive. We know it’s bad, let’s make it better,” says Isao.
Hamish says it’s been so long since dementia has been a part of their lives, that he hasn’t noticed a difference in her parenting, “it hasn’t impacted my family, and that’s partly due to mum’s ability to manage all these things at once”.
“It’s been a really supportive network. I have not been expected to take on these extra roles, but we all just help each other out.”
Even Ashlyn, the youngest on the panel, finds ways to help her dad, “we get him into the routine of getting ready for the day”.
Isao’s worries for his younger brother – Isao’s step-father is his biological father – that he doesn’t have a father figure.
“It’s a big gap to fill, and I’m not the one to fill it. But I do try to help him out and assist him, just be with him.”
An audience member asked Hamish, “if you could have 10 minutes with the Prime Minister what would you tell him we need in terms of dementia?”
Hamish responded, “I don’t know if funding alone is enough, I think it’s more of a social issue than a political one, in terms of how people treat the elderly in general”.
Sure, they could set up more dementia specific centres or supply new funding, but even in my grandmother’s nursing home the reason that they cut staff and the reason they didn’t feed everyone is because they are building other nursing homes.”
“It’s a business, they are economic minded first, and I just don’t think that works when you’re looking after people. Especially people with dementia.”
Another audience member, a mum with dementia who has a daughter the same age as Isao, asked him “if he ever got angry at his situation that he has no control over?”
“It makes me more sad, there’s no point in getting angry”, says Isao, “because you can’t get angry at disease. It’s not something you can just sort things out with – it’s just there.”
“It makes me more sad that there is no cure, no treatment to fix it. If we do combine our knowledge and technology, then I think we could make things easier, definitely.”
Ashlyn said “having someone with dementia in the family can be a really good thing because then you learn how to be a really caring person”.
Hearing from young people who are impacted by dementia, a challenging illness in their family, it’s truly remarkable how they find ways to become resilient and turn it into a positive.
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