The dementia debate ignited by a Whopper burger 

A recent LinkedIn post ignited the debate about aged care’s perception of innovation in dementia care, drawing out passionate explanations of what is – or is not – best practice. 

At the centre of the action is one of Australia’s leading aged care service providers in the dementia care space, HammondCare.

They shared a seemingly innocuous post about an aged care resident living with dementia who wouldn’t leave his room and insisted on eating only tinned peaches. After speaking with HammondCare, Hello Leaders has learnt the resident was transferred to HammondCare’s Horsley Hart Cottage last October under the Specialist Dementia Care Program. 

A team member asked the resident what one thing would encourage him to join the other residents in the dining room and his request was relatively straightforward: a Hungry Jack’s Whopper burger. 

And so, with boxes donated by the fast food chain itself, a burger and fries were prepared on-site and presented to him in the public dining room.

But if he wanted a Whopper, why not take him out to get one to experience genuine community engagement, questioned Rodney Jilek, Managing Director, Community Home Australia. 

“Deceiving people is not innovation. There is a perception that because it’s too hard to take people out, the next best thing is to replicate everything in some kind of alternate reality. We don’t do this for any other group of people,” he told Hello Leaders. 

“Providing true person-centred care is not as easy as putting it on your marketing material. It takes huge effort and resources.

“Our guests order from over 40 local restaurants when they want something not on the menu. Cooking a burger and then putting it in a Hungry Jack’s box simply to fool him is not okay.”

As is the case with social media, what we see is not always the full story. Angela Raguz, General Manager, Residential Care and The Dementia Centre, told Hello Leaders that the resident is regularly taken to Hungry Jack’s, but it’s not always practical due to multiple health conditions or the opening hours of the local stores in the Illawarra region. 

“It is oversimplifying things to say, ‘take him for a burger’. Part of the rationale was about the opportunity for this gentleman to engage in the community within his household,” she explained to Hello Leaders. 

“This is not about trickery and deception – such as a situation of deceiving someone into taking medications without their knowledge. This is about trying to meet the needs of the resident as the care staff understood them.”

However, passing off a regular burger as a Whopper has resulted in the initiative being labelled inappropriate. Unintentional or not, it represents the greater debate over the use of fakes in aged care: fake shops, fake bookshelf door decals, fake food and fake experiences. 

Mr Jilek said there is no need for it. 

“If we can take people who are completely chair bound, with multiple comorbidities and disabilities out into the community when they want, why can’t everyone else? While the argument will be funding constraints and lack of resources (staff) is it reasonable for older people to pay the price for a system that fails to meet their needs,” he said. 

Where do we draw the line?

One of the big questions being asked is whether it’s okay to lie to someone with dementia. There are situations when a person with dementia is experiencing heightened distress or confusion that cannot be easily remedied.

Ms Raguz said that the intention is to never deceive or coerce someone with dementia. Instead, they always look to meet them at the point they’re at and enter and work in their world.

“Dementia is a cognitive condition where there are date and time transitions in the mind that are not always clear. The person living with dementia can move themselves backwards through their memories. We all do this to some degree, but for those living with dementia it’s pronounced enough to become their reality,” she said. 

“It’s not uncommon for someone with dementia in aged care to have their reality set in a time and place many years ago. They may ask where their much-loved parents are, for example. Is it our role to tell them – sometimes frequently during the day – that their parents died 50 years ago? This would cause ongoing distress and grief every time they hear this news.”

Putting ourselves into the space of someone living with dementia and working with their idea of time and place is what personalised care is about. Forcing our interpretation into their reality can cause unnecessary hurt and distress. Our intention should be to reduce this.

She added that it’s essential to understand the person and the unique reasons for the distress behind their behaviours. 

This is an approach Mr Jilek is aligned with, calling it a “reasonable premise to operate under” but he still draws the line at deception.

“I think there is a big difference between redirecting someone from a delusional thought, such as searching for their deceased parent for instance, and deliberately deceiving someone because delivering the real thing is too hard for you.”

Taking every opportunity to learn

One major outcome of this debate is that The Dementia Centre/HammondCare will discuss the matter at September’s International Dementia Conference in Sydney.  A simple post resulted in passionate conversation and a learning opportunity for all involved in dementia care. 

As for the resident at the centre of it all, Ms Raguz said the care team has delivered an effective solution to increasing engagement with other residents at mealtimes. 

“We need to keep learning and keep modifying care practices. Each person living with dementia is an individual who has their own story and care needs to be tailored to each one,” she added. 

“A punitive culture, where we criticise and punish where innovative thinking does not work as expected, is not the best way to bring about positive cultural change in care environments. We need to have the back of our care teams as they attempt to improve the quality of life of people with complex care needs.”