My advice to people caring for a loved one living with dementia

We reached out to people who care for a loved one living with dementia asking them to share their advice for other carers.
Here’s what they told us.

Frances – caring as an act of Love 

Frances said becoming a carer for her husband Danny when he was diagnosed with younger onset Lewy body dementia changed life as they knew it. 

“We did everything together. We were very close, a team,” Frances said. 

As Danny became more dependent on her, Frances sought out ways to reframe her life in the context of being a carer. 

“What has sustained me is to see all the small and big things I do for Danny as an act of love to thank him for the more than 30 years he has loved me, even when I least deserved it, Frances said. 

“It’s also helpful to see myself as a carer role model for our children, it gives me pride and keeps me on track doing my best.”

Frances found the support she received from Dementia Australia, including completing a carers course, and free counselling very helpful in the early stages of the diagnosis and would highly recommend these to new carers.

Karen – reaching out for support

Following her Mum’s diagnosis, Karen was trying to process what the diagnosis meant and what life was going to look like moving forward. 

“I remember calling the National Dementia Helpline quite early on,” Karen said. 

“I couldn’t sleep so there were 3am phone calls to the helpline. 

“In those moments, being able to chat to someone who knew and understood dementia meant a lot. 

“I was finding that people around me had little understanding of what was going on.” 

Karen said she  also found simple and fun ways to reconnect with her Mum.

“When I was a little girl, I used to call my Mum into my room and play hairdressers,” she said.

“Now I sit her down at the dining room table and say we're going to play hairdressers, and I’ll do her hair for her.  

“I make her favourite foods and take that over so that she still gets that home cooked meal. 

“We dance and we sing. I find that music sort of transports Mum, which is just incredible.” 

Cat – find glimpses of joy

Cat, a full-time carer for her father who is living with advanced Alzheimer’s disease,  spoke about finding joy in the little moments. 

“Meet them where they’re at,” Cat said.

“Meet them there and try to find the little glimpse of joy.

"If you pick a few things that you choose to hold on to, I think you can get through it better.

“I also think it’s important to seek support as that is what will help you get through it all.” 

Bruce – managing complex emotions

Bruce said it is important to acknowledge the difficult emotions that often come up when caring for a loved one and how reaching out for help can make a real difference.

“It took me a while to realise but when I was caring for my brother (who lives with dementia), just before he had to go into full-time care, it was taking up a lot of my time, as well as my wife’s time,” Bruce said. 

“So, I got help and I’m happy to admit that I got help because you cannot do it alone. 

“You’re going to feel resentment and therefore not going to be able to look after them or you and it’s going to end up hurting both of you.”

Bernie – creating meaningful moments

Bernie has a very strong bond with her older brother, Michael, who lives with Alzheimer’s disease and Down syndrome.

“I didn't know that people with Down syndrome were more likely to get dementia,” Bernie said. 

Her deep understanding of his likes and dislikes has helped her to create meaningful moments. 

“Michael loves Elvis Presley and he loves to dance. He is such a good dancer.

“When I go to visit him, I put Elvis on and I grab his hand and we dance away.

“It’s important to have a good history of the person – knowing what they like and what they don’t.

“It’s really hard and it’s sad. But getting as much support around you as you can to enjoy the small moments is important.”

Support for carers

If you’re caring for someone living with dementia, you’re not alone. Visit the Family, friends and carers section of our website.
You can also contact the National Dementia Helpline on 1800 100 500 or visit the website for options for live chat and email support. 
Dementia Australia’s podcast Hold the Moment features stories from carers of people living with dementia. You can listen to Hold the Moment on our website or wherever you get your podcasts.

Dementia Australia’s Younger Onset Dementia Guide is the go-to resource for people living with younger onset dementia (diagnosed before the age of 65) as well as their carers and family.