Support for carers the key to managing dementia

Could this be what the future of dementia care looks like?

A new technique with online tools that puts carers front and centre is not only improving outcomes for carers, it’s also improving the care they are providing for their loved ones.

It’s estimated more than 1.2 million Australians care for someone with dementia. With the number of people living with dementia in Australia expected to rise from more than 400,000 today to over one million by 2056, how we care for those who have dementia is an issue of national significance.

Managing the behavioural and psychological symptoms of dementia

While dementia is generally associated with memory loss and cognitive impairment, 98 per cent of those who are living with dementia also experience behavioural and psychological symptoms, which can range from depression to psychosis, through to agitation, aggression, apathy, sleep disturbances, and even inappropriate behaviours.

One of the most difficult aspects of caring for someone with dementia is managing these behaviours, and can lead to carers suffering distress and even depression.

Not only can managing these behaviours be challenging, it’s also costly. It’s estimated that managing the behavioural symptoms of dementia accounts for around 30 per cent of the cost of caring for someone who is living with dementia.

When carers are struggling, it’s well established that the person with dementia is more likely to be injured, admitted to hospital, moved into a nursing home, or even experience reduced morbidity, studies have shown.

Often, medication is given to control the behavioural symptoms of dementia, despite research showing that the risks can outweigh the benefits and their effectiveness is quite small.

Web-based tool: helping carers manage behavioural symptoms of dementia

But a new technique being developed in the United States by the University of Michigan is helping carers manage the behavioural symptoms of dementia at home without the use of medication.

The University developed a technique called DICE, which helps carers Describe the behaviour, Investigate the cause, Create a plan, and Evaluate the plan’s success – and new research has shown the technique reduces the incidence of distress among carers.

The study used a web-based tool called WeCareAdvisor which uses the DICE technique.

The study involved asking caregivers to answer online questions about the behaviour they were observing, and then a plan is developed from nearly 1,000 strategies. If the strategy doesn’t work, a new one is tried.

The carers also received information about dementia and daily messages of encouragement – putting the carer’s wellbeing front and centre.

The trial found that carers’ distress levels declined – not only improving the wellbeing of the carer, but improving outcomes for the person they are caring for.

The University of Michigan is hoping to make the DICE tool universally available with online tutorials and publications.

User Katie Sieloff told told NPR she couldn’t imagine where she’d be without the DICE tool.

Ms Sieloff cares for her husband at home, and said she had often felt “overwhelmed” and at times needed help coping with her husband’s dementia.

The DICE technique puts the carer at the centre of the person with dementia’s care, helping to both ease the burden on the carer, and improve the experience for the person with dementia.

“It’s given me a whole new life,” she said.