Young carer calls for more dementia education and awareness

Dementia impacts people of all ages, even though it is better known as an older person’s disease. Tully Smyth knows this all too well.

The media personality, blogger and former Big Brother contestant’s life changed forever 13 years ago when her role as teenage daughter flipped to carer for her Mother, Kay Smyth, who was diagnosed with Early Onset Alzheimer’s, aged just 51.

Following September’s Dementia Awareness Month theme, ‘You are not alone,’ and with Carers Week approaching (October 16-22) Tully is encouraging more young people affected by or caring for someone with dementia to join in the conversation.

'I needed mum... she started to need me more'

“A lot of mum’s family and friends didn’t know how to respond to her diagnosis of Alzheimer’s and distanced themselves from her, but also from us. Most didn’t know how to help or behave around her,” said Tully.

“I became Dad’s only adult confidant, instead of his teenage daughter and that was, and still is, a hard role to fill.

“15 is a tough age for a girl. I was trying to figure out who I was and navigate through puberty and high school when Mum became ill,” said Tully, now 28.

“It was heart wrenching to do things like go formal dress shopping with a friend’s mum because the trip would have been way too distressing for my own. I was at a point in my life I needed my mum the most but she had started to need me more.”

More education, awareness needed

Tully believes that there needs to be more education on the effects and realities of dementia to help the wider public understand what some families go through.

“If I was to say my Mum had terminal cancer, everyone would have had a different reaction to her diagnosis. People can understand and empathise with cancer because we understand the disease more. Everyone knows someone who’s had cancer.

“Yet dementia is the second biggest cause of death in Australia and an estimated 1.2 million people are involved in the care of someone with dementia. Until we amplify our awareness and support, our communities are going to have a very hard time coping with this disease.”

Children often go unnoticed

The Cognitive Decline Partnership Centre - of which HammondCare is a founding partner - conducted research into the impact on children and families whose parents live with younger onset dementia.

Their research showed that there are few services that offer emotional and social support to younger people, and even when there is, the children of a younger person with dementia often go unnoticed despite being impacted over a longer period of time.For Tully, the experience has been no different.

“It was extremely isolating for myself and my brothers who were eleven and fourteen at the time. They couldn’t fully grasp why Mum was forgetting who we were, acting out in violence one minute, and loving us the next.

“We weren’t told, taught, or encouraged to talk about what we were experiencing. That’s something I really want to stress to other young people who help care for someone in their life who has dementia; you’re not alone, be strong, speak up. There are plenty of people in your position."

Young people become carers

As the eldest of three siblings, Tully alongside her Father, Phillip Smyth, and eldest brother Scott became Kay’s fulltime carers. A not uncommon role but one that is often invisible, according to the CDPC research, which heard most young people felt there was a lack of recognition, understanding and support of their roles within the family.

“Even though I had plenty of friends growing up, I couldn’t bring myself to tell them what was happening at home. I stopped inviting them over. It was distressing and morbid to talk about let alone live with. So asking for help seemed impossible. Hopeless even,” said Tully.

When Tully was 18, her mother, Kay, was moved into full time care. The strain of caring for Kay at home had become too much for herself and her father.

A caring home away from home

“After years of moving her from home to home, we found her residential care at HammondCare’s Hammondville dementia specific home. She has been there for seven years now and we can confidently say it’s her home.

“Although she is now bed-bound, and has long ago lost her ability to talk or recognise us, she is receiving a standard of care that my family couldn’t personally give her.

“Visiting is heartbreaking. It takes me days to work up the courage to make the trip. We all handle it differently but I choose to sit in silence with mum, give her a hand massage, kiss her forehead - these days that’s the most connection we can have as mother and daughter. Usually I’m silently crying from the minute I see her till the minute I say goodbye but I leave knowing that the compassion she is shown is unmatched.”

Time to join the conversation

Tully is now encouraging others to join in the conversation. Whether it is a parent, a family member, or a grandparent with dementia – younger people are still touched by the disease.

“We had a particularly hard and difficult experience so I kept it to myself. But now it’s all the more reason to speak out about it. We need more understanding, acceptance, awareness and perhaps most importantly support while we search for a cure.”