“You don’t have to struggle living with dementia”: Five tips to make your loved one’s life easier from advocate with early-onset dementia

Donna Lee was diagnosed with early-onset dementia at 52 and instead of ‘living her life in a bubble’, she’s become a voice of people with dementia.

Donna Lee living an active social life as a dementia activist

“I am still learning to live with it. It can take years,” Donna said during Dementia Action Week.

“I would say, it’s like losing someone you love. You grieve them, and then you learn to live with it.”

When Donna received her diagnosis, she dove deep into her new reality with the intention to make the best out of it and found a new passion.

“I took courses and started attending support groups run by Western Sydney Local Health District (WSLHD) and Anglicare,” the Stanhope Gardens resident said.

Donna’s mother had dementia too. However, back then there was limited information and support available for those diagnosed and their families.

“I want to make it up to my late mum by spreading knowledge about dementia. I want our future generations to know, understand and have more sympathy for their loved ones.

“When we change, it’s not who we used to be anymore. It’s dementia.”

Donna is a volunteer of Western Sydney Dementia Alliance (WSDA), working towards western Sydney being a dementia-friendly community. WSDA carers and volunteers provide education to the public and public service providers, like train inspectors, on how to identify and approach someone with dementia.

“If you see someone wandering around and looking confused, ask them if they’d like to sit or use a bathroom. You don’t know how long they’ve been disoriented. Then you can ask them if they need help,” Donna said.

Donna’s motto is “you don’t have to struggle living with dementia”.

“It gets easier as you learn new ways of living with it,” she said.

Donna with her beloved children

Donna has shared her top five tips on how to make life easier for those living with dementia and their loved ones.

1. Get help.

“Carer support is available. Don’t make your children’s time with you feel like work. Learn to accept help and spend quality time with your friends and loved ones,” Donna said.

2. Speak for yourself.

“Your carers and family are always there to have your back. But their help can be a little too much at times.

“When you’re asked a question, speak for yourself. It’s a great exercise for your brain!”

3. Get involved

“Ask your family to get you involved in tasks you are capable of doing. Whether it’s making a sandwich from prepared ingredients or setting up a dinner table.

“You need to practice those skills you have.”

4. Don’t isolate yourself – keep connected in a COVID safe way

“We all love our ‘safe bubbles’ but interacting with people is great for keeping our brains active.”

5. Meet other people with dementia

“Attend dementia support groups and share your experience with people in the same situation as you are. You will learn so much.”

20-26 September 2021 is Dementia Action Week. Western Sydney Local Health District joined Dementia Australia, Anglicare, City of Parramatta, Cumberland Council and Blacktown Council to host an information webinar “Dementia- all the questions you’re afraid to ask.”

Click here to register and ask Donna your questions about dementia.