For Will, who was 16 at the time, it was a very confusing time. “There were gradual changes which alerted us that something wasn’t right with Mum. She put socks in the fridge; left the iron on; began to forget people’s names and was struggling with maths and the sequencing of tasks at work, where she was in senior management. She couldn’t use the microwave; she’d take the wrong turn whilst 
Supporting children and adolescents
Dementia has an impact on the whole family, including children. Children may see changes occurring in their relative and not understand what is happening, or feel able to talk about it.
In the years since Ronnie’s diagnosis, her health has deteriorated
Her mobility has declined meaning she has to rely on walking aids or a wheelchair, and she has developed multiple complex health problems.
“One of the saddest aspects is watching Mum lose her independence and life as she knew it,” Will says. “Her close friendships changed as her friends didn’t know how to cope with the diagnosis.
“We always cherish our time together, but there are reminders of how the dementia affects her. I remember one day, I was holding some popcorn, and to my shock she slapped it out of my hand. It went everywhere. I thought it was funny at the time, but looking back it makes me feel sad.”
“Mum still has a passion for life”
Following Ronnie’s diagnosis, Will got into running as a way of managing his mental health. He has taken on a number of running challenges, including running seven marathons in seven days, to raise money for dementia charities. Will also facilitates international online support sessions for the children of people living with young onset dementia for Lorenzo’s House, an American charity supporting younger people affected by dementia.
“It’s amazing because you’re with people who understand what you’re going through. There is someone to hear you out and support you. I want to empower young people with parents who are affected by dementia to be advocates for change. The biggest misconception is that dementia only happens to older people.”
Family life has changed a lot. “Dementia unfortunately only travels in one direction,” says Will. “Mum will occasionally call me by her brother’s or my dad’s name, but we really get each other. I call her every day. She has always been my sounding board. I know by the tone of her voice if she’s tired or worried and often have to slow her down to take a few deep breaths if she has walked to answer her phone.
“Mum has good days and not so good days, but she has become an incredible dementia advocate. She participates in lived experience panels and groups; speaks to trainee doctors and nurses about her perspective of living with dementia and takes part in research. It’s impossible to be around her and not feel her passion for life but I worry about the day when my phone calls are no longer answered.
“For now, I love talking about her dream of driving a tractor and planning our next wheelchair adventure. She makes everyone around her feel loved, and a hug is essential at all times.
“Being a carer, or, as I prefer to say, a hero can be isolating. Even if all you can offer is your ability to listen or post a nice note to say you are thinking of them, it will lighten their day.”
