Caring for someone you love as dementia progresses

When Stephen’s wife Margaret was diagnosed with Alzheimer’s disease 18 years ago, the couple vowed that they would remain together and in their home for as long as possible.

Stephen said this promise has helped him when making decisions about what is best for his wife of 42 years, particularly now that it is difficult for Margaret to communicate her needs.

As Margaret’s condition has progressed he has learnt to adapt.

“It’s like walking into a river – you can’t stop it flowing but you can make adjustments so that you’re going with the flow,” he said. “I have to remind myself that this is the evolution of the disease – Margaret’s brain is changing and there are some things she can’t do anymore.”

Stephen describes their relationship now as the most intimate of their 42 years of marriage. 

“To care for your life-partner when she is in real need is a very rewarding vocation,” he said. “We maintain a loving, caring relationship; in some ways more enriched and better than before.”

Stephen, who is a peer leader in Dementia Australia’s Connecting Peers program, finds it rewarding to use his experience to support others who are travelling down a similar path.

“Often, especially for men, learning to ask for help and accepting it can be difficult,” he said. 

Cultural considerations

Difficulty in asking for outside help is something that Sanna, who helped care for her mother Samiha, said was common in her community – the Arabic-speaking, Muslim community.

“In our culture, when your parent has got dementia it’s the responsibility of the children to look after the person,” she said. 

For more than 10 years Sanna and her siblings shared the care of their mother, who lived with Alzheimer’s disease, taking on greater responsibility as her condition progressed.

It was a stressful time for them all as they juggled caring for their beloved mother with the demands of their own families, jobs and other responsibilities.

Sharing the care

It wasn’t until Sanna attended a Dementia Australia awareness course that she realised that some of the things they were doing were actually making it more difficult for everyone, especially their mother.

For example, sharing the care meant that Samiha would stay at the homes of Sanna and her siblings for several days at a time.

“Moving her from house to house meant we kept changing the environment and it was confusing for her,” Sanna said.

When they realised that it would be better for their mother to remain in her own home and for them to stay with her instead, Samiha became a lot calmer due to having a regular routine and familiar environment.

Sanna also realised that the use of colour and patterns that were part of her culture, were adding to her mother’s confusion.

She started wearing a non-patterned hijab when visiting her mother and followed Dementia Australia advice on creating a dementia-friendly home to make the house more suitable for her mum. 

“We did a lot of wrong things at the beginning because we didn’t know but when we made those small changes she became a lot calmer,” Sanna said.

Samiha recently passed away but now Sanna’s goal is to help others in her community understand that there is support available for them and their loved one with dementia.

Where to find support

If you want advice, support or information to help you care for someone you love, you can contact the National Dementia Helpline on 1800 100 500. 

The National Dementia Helpline operates 24 hours a day, seven days a week on 1800 100 500 or visit our website.

To find out more about Dementia Australia’s Connecting Peers Program, visit the website.

If you would like more information in another language, including Arabic, visit the Dementia Australia website for translated resources.