Whether or not it is acceptable to lie to someone in the advanced stages of dementia is a moral dilemma faced by many carers.
Take, for example, the following two scenarios.
A woman with dementia is anxious because she believes her husband is late to pick her up. She doesn’t remember that her husband died many years ago. Previously, when similar concerns have come up, carers have told her that her husband is dead, which has resulted in the woman becoming upset and distressed. So this time, the woman’s carer tells her he’s at the shop and will be there soon, and asks her if she’d like a cup of tea. The woman is reassured and calm.
Consider also the wife who hides her husband’s car keys because doctors and authorities have told her it’s not safe for him to drive because he has advanced dementia. When she initially told him he can’t drive he became furious, so now she tells him she doesn’t know where the keys are.
In both these examples, carers have used ‘white lies’ or ‘therapeutic lies’ to prevent distress and agitation in a person who is living with advanced dementia.
By telling an untruth, the carers are in fact sparing the person from hurt, shock and sadness which they know would only cause pain, confusion and suffering.
Sometimes telling a ‘white lie’ can also help the interactions between carers and people living with dementia, because it may prevent the need for a person with dementia to communicate distress through stress-related responses such as anxiety or tearfulness.
Of course, lying is generally considered a ‘wrong’, and it is not acceptable to lie to people who still have the capacity to make decisions about matters you are discussing. This article relates to those with dementia who no longer have the capacity to make decisions.
Leah Bisiani, Dementia Consultant with Uplifting Dementia, told HelloCare that lies told to people with dementia are not really lies in the sense that we know them.
“I would contend that perhaps these so-called ‘white lies’ not be considered lies at all, since they are not a deliberate act to betray or trick,” she said.
Medical ethicist Maartje Shermer wrote that when someone is In the later stages of dementia they can no longer distinguish between reality and a falsehood, so in effect, it’s impossible to lie to them
“Once patients reach a state in which concepts such as true and false, reality and illusion, or fact and fantasy do not mean anything to them anymore it becomes logically impossible to deceive them or to lie to them,” she wrote.
Ms Bisiani said, “I argue that people living within their own inner world should never be forced out of it with a request to orientate to our truth and actuality, if all this will create for them is pain. This is regarded as gross neglect and betrays the spirit and ethos behind true person-centred care.
“Instead, are white lies possibly providing a compassionate authenticity for the person, where therapeutic privilege provides them with a means to participate in a role that is meaningful and rewarding to them?
“When attempting to understand a person living with dementia we endeavour to capture these differing viewpoints and scrutinize the clarification of what we observe. In this way we acknowledge, and thus support each person’s reality as ‘his or her own personal truth’.
“We must honour and respect these differing experiences and perceptions and aim to give these realities the ‘voice’ they deserve.”
It’s important to acknowledge that carers sometimes tell ‘white lies’ to people who are in the advanced stages of dementia because that recognition can ease any concerns carers might have about the morality of what they are doing.
By discussing the topic we also have the opportunity to ensure it is done in the best way, and we open up opportunities for discussion.
“If we disregard the potential benefits of ‘validation’ regarding the emotional wellbeing of people living with dementia, then we may possibly jeopardize the stability of everyday life and the capacity to thrive,” said Ms Bisiani.
“Any intervention that connects positively with people living with dementia at a profound level is essentially right,” she said.
Personally I don’t believe either situation necessarily required a lie. With the lady whose husband had died I would have used positive physical engagement, asked her to ‘tell me about it’ and ‘let’s have a cuppa’ and diverted her attention away, encouraging her to tell me her and her husbands story. With the gentleman wanting to drive, I would have engaged in a discussion about the hazards of driving these days when our reflexes aren’t as good and sight not all it was, and how fast everything moves and considering how our diagnoses of dementia would affect the insurance in an accident regardless of whether we in the right or not.I would have discussed the resulting financial fall out. You see the fury and upset comes from being told they can’t do something, an adult being treated like a child. Still wants to drive after that then I would ‘lose’ the keys lol. It takes more time not to lie, but I believe the results are better and it honors the trust between those cared for and those caring for. I’m not saying ‘white lies’ are wrong (I’ve used them), I just think they should be a tool of absolute last resort. I also don’t believe in the cruelty of constantly trying to orientate them to a time and place they no longer reside in, we need to get better in step with them in their now.
My father had Catatonic depression and two types of dementia. Frontal Lobe and Vascular Dementia. Heavens when he was in the nursing home, he was given an ambulance bill for about $200 and his name was spelt wrong. In WA the elderly have free ambulance service so he should never have received a bill. Well I tell you he stressed and stressed and in his mind it grew to $20,000. No one knew how to calm him down, no matter what they said. It took me to go home and photo copy the Ambulance service letter head and make up a story that the other Melvin was spelt different and he used the ambulance like a taxi service. I wrote an apology for him, making him a life member of the service, I signed of as a fictious name as an account’s manager. Used an old posted envelope. I tell you when I gave it to him and I read out, he pushed out door of his room ordering in desperation to give it to nursing home manager as proof it wasn’t his bill. He was so relieved and laughing, all was good for him. He wouldn’t take his medication, drink or food while he was so stressed. Yeah sometimes one may have to go to different lengths to help them out of their doom and gloom. My mother had Dementia as well, they have both past on. I treasure the letter I made because it was the matter of life and death for my father. You have to play the game with those suffering. I would do it all over again if I had to.
Yes – exactly. Good for you for going the extra mile to help your dad feel the relief he needed to put his mind at ease. God Speed.
I agree with most of what you are saying, I don’t believe we are lying but putting ourselves into their world to give them a response that they need, rather than upsetting them by telling them the hard truth or that they can’t do something. Like saying the neighbour is picking up the kids from school, or the kids are at a friends house after school, or hubby has gone fishing or to the shops, food for dinner is in the fridge, I bought it this morning. Where I respectfully beg to differ is talking about the hazards of driving or the dementia diagnosis. He probably won’t agree with the hazards as he has always been a good driver and he can’t recognise the changes dementia has bought with it. Mentioning a dementia diagnosis generally only brings more confusion and denial because the il ess has taken away that clarity of thought.
Mum has Alzhiemers in the advanced stage. Quite often she asks how her mum and dad are. I have always told her that they are fine and are just taking things slowly. In winter I tell her that they are sitting in front of the fire keeping warm. My sister wasn’t sure if I was doing the right thing but I said to her that I would much prefer mum to be happy knowing that her mum and dad are okay than telling her they have died. I can imagine how upset mum would become. So I think if it means your parent or whoever you are caring asks a question and the answer would upset, cause pain or sadness then by all means lie. What harm will it do and it makes all the difference to the person you are caring for.
As a family member of a person with dementia, the question is: am I going to inflict pain and confusion on this person, or am I going to give them comfort and reassurance.
The answer is obvious to me.
I lie to my mother most nights when she is sundowning. She starts asking after Cherry (my intellectually impaired sister, now deceased, who lived with Mum as a permanent child for all her life and who I cared for during the last 8 years) Cherry shared a room with Mum after Dad passed away as they both felt the need for comfort. If I tell her compassionately that Cherry has passed away, it is as though she has just heard the news for the first time and is hit by a huge grief and upset. I then have to go through it in detail, how Cherry died and show her photos of the decorated casket at the funeral and eventually she accepts this is true. This takes hours, late at night and upsets her so badly that she doesn’t settle. Sometimes she starts stress vomiting. Now, I tell her cheerfully that Cherry is over at Carinbundi (The local respite place) enjoying her time out from us with all her friends and being spoiled rotten by the staff. For years, Cherry went once a month for a weekend so Mum is accustomed to that and accepts the story with a smile, curls up and goes back to sleep. Only a cruel person would torture a mother every night with the horror story of her cherished and most special child’s death….so….yes….I do lie on occasion