Dementia is now the leading cause of death in Australia, and the number of people living with the condition continues to grow. Dementia Australia estimates around 450,000 Australians are currently living with dementia, with that figure expected to rise to more than one million by 2065.
Behind many of those diagnoses are family members stepping into the role of carer. In fact, an estimated 1.7 million Australians are involved in caring for someone with dementia.
There is no perfect way to care for someone with dementia. “What works one day might not work the next,” says Dr Isabelle Meyer, Executive Director of Dementia Training Australia, which provides education and training on dementia care.
“It is common for people as their dementia journey progresses to experience significant variations in their behaviour,” she adds. “It is the unpredictability and the intensity of the emotional swings that can be hardest for families.”
While every person’s experience is different, there are a few simple ways to help your loved one feel more supported while looking after yourself too.
Behaviour is communication
Aggression, confusion, repetition and wandering can be difficult to deal with, but Dr Meyer advises thinking about what the person might be trying to communicate.
“It is important to remember that any changes in behaviour represent an attempt to communicate, especially as verbal communication deteriorates,” she explains.
She encourages carers to become a “dementia detective” and look for possible triggers. Could they be tired? In pain? Anxious? Confused?
The answer won’t always be obvious, but understanding what could be driving the behaviour makes it easier to respond.
“Distraction is a great technique for some occasions, where you offer another activity instead of the wandering, for example,” Dr Meyer suggests.
“Repetition can often be the individual trying to re-establish a forgotten pattern of behaviour or sometimes just to be close, so finding ways to connect may help.”
Stay in the present
“Don’t focus on ‘remember when’ questions but focus instead on the here and now,” Dr Meyer says. “They may recall things from the past, but sometimes reminding them of the past isn’t helpful.”
How you communicate matters just as much as what you say. “Make eye contact, speak calmly and quietly, smile, call them by their name and remind them of your name.”
A simple activity can help bring someone back to the present. Dr Meyer suggests going for a walk together, counting the trees you see or talking about what’s around you.
“This is grounding and can be distracting if they seem agitated,” she explains. “It also connects them to you, so they will be calmer and focused on you, not on what was upsetting them.”
Her advice is simple: “Focus on making memories rather than reliving them.”
Give them time
When someone struggles to find the right words, it’s instinctive to jump in and help. But finishing their sentences or taking over tasks too quickly can do more harm than good.
“We need to allow people more time to hear and respond,” Dr Meyer says.
“While we can prompt, speaking for them can eventually mean they stop trying to communicate.”
Keep moving together
Staying active is one of the simplest ways to support both physical and brain health.
“It is very easy to let things like going for a walk or engaging in other physical activity slide, but what brain science tells us is that even the smallest amount of physical activity every day is beneficial,” Dr Meyer explains.
A walk around the block or helping with simple chores around the house like folding towels or watering the garden all counts.
“The more active people can stay, the better it is for delaying the progression of the condition.”
Watch the carer, too
Looking after someone with dementia can be emotionally and physically exhausting, and carers often become isolated without realising it.
Dr Meyer notes feeling unusually tired, cranky, withdrawn or struggling to concentrate can all be signs you’re reaching your limit.
“It is the carer as much as the person living with dementia that needs that contact with others,” she says.
Respite care may be available through support packages, while My Aged Care, Dementia Australia, Dementia Support Australia and state-based Alzheimer’s organisations can connect families with practical support.
Above all, don’t try to do it alone.
“Caring for someone with dementia is a team sport,” Dr Meyer stresses. “Don’t leave it to one family member or friend alone.”
The one piece of advice she wants everyone to take on board? “The best medicine is connection and activity. Make sure both the person living with dementia and the carer know they are not alone.”
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