There was disagreement on social media recently after a story was published about an aged care provider creating "fake-away" burgers that mimicked those from a fast-food chain, to a resident living with dementia.
The man had such strict food preferences he was refusing to eat anything at meals except a burger from a particular franchise. This dementia symptom risks malnutrition and social isolation.
But critics of the fake burger approach labelled it trickery and deception of a vulnerable person with cognitive impairment.
Dementia is an illness that progressively robs us of memories. Although it has many forms, it is typical for short-term recall — the memory of something that happened in recent hours or days — to be lost first. As the illness progresses, people may come to increasingly "live in the past", as distant recall gradually becomes the only memories accessible to the person. So a person in the middle or later stages of the disease may relate to the world as it once was, not how it is today.
This can make ethical care very challenging.
Is it wrong to lie?
Ethical approaches classically hold that specific actions are moral certainties, regardless of the consequences. In line with this moral absolutism, it is always wrong to lie.
But this ethical approach would require an elderly woman with dementia who continually approaches care staff looking for their long-deceased spouse to be informed their husband has passed — the objective truth.
Distress is the likely outcome, possibly accompanied by behavioural disturbance that could endanger the person or others. The person's memory has regressed to a point earlier in their life, when their partner was still alive. To inform such a person of the death of their spouse, however gently, is to traumatise them.
And with the memory of what they have just been told likely to quickly fade, and the questioning may resume soon after. If the truth is offered again, the cycle of re-traumatisation continues.
A different approach
Most laws are examples of absolutist ethics. One must obey the law at all times. Driving above the speed limit is likely to result in punishment regardless of whether one is in a hurry to pick their child up from kindergarten or not.
Pragmatic ethics rejects the notion certain acts are always morally right or wrong. Instead, acts are evaluated in terms of their "usefulness" and social benefit, humanity, compassion or intent.
The Aged Care Act is a set of laws intended to guide the actions of aged care providers. It says, for example, psychotropic drugs (medications that affect mind and mood) should be the "last resort" in managing the behaviours and psychological symptoms of dementia.
Instead, "best practice" involves preventing behaviour before it occurs. If one can reasonably foresee a caregiver action is likely to result in behavioural disturbance, it flies in the face of best practice.
What to say when you can't avoid a lie?
What then, becomes the best response when approached by the lady looking for her husband?
Gentle inquiries may help uncover an underlying emotional need, and point caregivers in the right direction to meet that need. Perhaps she is feeling lonely or anxious and has become focused on her husband's whereabouts? A skilled caregiver might tailor their response, connect with her, perhaps reminisce, and providing a sense of comfort in the process.
This approach aligns with Dementia Australia guidance that carers or loved ones can use four prompts in such scenarios:
- acknowledge concern ("I can tell you'd like him to be here.")
- suggest an alternative ("He can't visit right now.")
- provide reassurance ("I'm here and lots of people care about you.")
- redirect focus ("Perhaps a walk outside or a cup of tea?")
These things may or may not work. So, in the face of repeated questions and escalating distress, a mistruth, such as "Don't worry, he'll be back soon," may be the most humane response in the circumstances.
Different realities
It is often said you can never win an argument with a person living with dementia. A lot of time, different realities are being discussed.
So, providing someone who has dementia with a "pretend" burger may well satisfy their preferences, bring joy, mitigate the risk of malnutrition, improve social engagement, and prevent a behavioural disturbance without the use of medication. This seems like the correct approach in ethical terms. On occasion, the end justifies the means.
Steve Macfarlane is head of clinical services at Dementia Support Australia and an associate professor of psychiatry at Monash University. This piece first appeared on The Conversation.