Dementia is a devastating and progressive disease that causes a decline in cognitive function, memory loss, and behavioral changes. One of the most difficult challenges for caregivers and loved ones of people living with dementia is how to communicate with them effectively. One question that often arises is whether it is ever right to lie to a person living with dementia.
Your initial response to the title of this Blog post may have been that yes, we should always tell the truth and no, we should never lie. After all, lying is generally considered to be unpleasant, negative behavior, and most of us are taught from a young age that honesty is always the best policy. Many of us will be familiar with the famous quote from Sir Walter Scott in his great 19th century poem, Marmion, “Oh what a tangled web we weave, when first we practice to deceive.”
However, when one is grappling with the day to day real world challenges of caring for someone who is living with Alzheimer’s or another form of Dementia, Carers often struggle with how to deal with, or respond to, situations or questions where the person they care for is being difficult, unresponsive, hostile or even seemingly absurd, or completely disconnected from reality.
Some might advocate that telling the truth is always the best course of action, no matter how painful it might be to the hearer. However, when it comes to communicating with a person living with dementia, the issue can sometimes be more complex than a simple foregone conclusion. People with dementia can often experience confusion, disorientation, and memory loss, which can lead to anxiety and distress. In some cases, telling the truth can actually exacerbate these feelings and make the situation worse.
For example, imagine that a person with dementia is constantly asking about their spouse who passed away many years ago. Telling them the truth, that their spouse is no longer alive, may cause them to repeatedly experience the grief and sadness that flowed from that loss. This can be distressing not only for the person living with dementia but also for their caregivers and loved ones. In such cases, it may be more compassionate and beneficial to tell a “therapeutic lie” instead, such as saying that their spouse is out shopping or visiting a friend. In other words, many carers believe that it is better to not challenge the absurdity, or reality disconnect in what is being spoken of, but rather to engage with the discussion and take it further, both to keep engagement and discussion going and to avoid the potential consequences of stress, agitation and upset. Patti Davis, the daughter of US President Ronald Reagan, in her memoir “Floating in the Deep End,” coined the phrase “creative lying,” and how this would cause him to be less flustered when he was worried about missing what he believed to be an important obligation.”
At a caregiver seminar that I attended in California, a young man who was caring full time for his mother living with Alzheimer’s, addressed the Group and shared that sometimes, usually towards the end of any given week, his mother would start to become difficult, unwilling to communicate with him and even hostile, and would refuse to take her medication. He prefaced what he was about to say with the words, “I apologize if some of you here are offended by this” and then told the Group that when his mother became difficult like this he would pop into the next room and put on a wig and a pair of clear-lens spectacles. He would then go back into the room where his mother was and would greet her by name and introduce himself as “Dr. Wilson” and say that he had come to remind her to take her medication. On every occasion, his mother greeted the “Doctor” warmly and happily took the medication.” Interestingly, no one in the room full of professional and non-professional family caregivers offered any criticism of his actions at all, as he had clearly found a way to dissolve a difficult situation and achieve a successful conclusion, even though his actions were rooted in deception.
I also heard a story once about a lady caring for her father who was living with dementia and how he became extremely agitated one day because a College had not sent him his certificate of achievement. This was impossible to resolve, as he had had no connection or involvement with the College in question and was certainly not due any kind of certificate. After a week of seeing her father become increasingly upset, agitated and angry about the failure of the certificate to arrive, his daughter created a Certificate of Achievement and presented her father with it when he enquired as to whether or not it had arrived. Once again, a piece of deliberate deception but it diffused a difficult situation, dissolved agitation and removed stress.
However, it is essential to note that what we have referred to here as Therapeutic, or Creative lying, should only be used when it is necessary to protect the person’s emotional and mental well-being, to eliminate stress or agitation and maintain emotional equilibrium. The word “lying” itself seems so harsh, so absolute, yet we need to remember that, by selectively lying to the person they are caring for, a caregiver is actually supporting that person’s reality; lying to a person with dementia may be the right way to care for that specific person at that specific time because, depending upon the progression of the disease, they may be wholly unable to remember the truth, and repeatedly telling them they are wrong, or insisting on facts will simply cause them distress or pain. As the Alzheimer’s Association has stated, “it is important to put oneself in the shoes of your loved one, and acknowledge how frightening their situation must be.”
It must be noted that not everyone agrees that therapeutic or creative lying is ever the correct decision; they believe that distraction, or gently changing the subject, or rephrasing the question or issue can be just as effective at restoring calm or dissolving stress. This school of thought relies on a gentleness of response that soothes someone with dementia by, essentially, avoiding or stepping around the problem or question that is causing anxiety. This approach does tend to assume that the person looking for their loved one, or worrying about a non-existent upcoming meeting, or waiting for a certificate in the mail, will either forget whatever is distressing them, or realize they were mistaken, or even eventually remember the correct facts and thereby peacefully move on.
In conclusion, the decision to lie or not to lie to a person with dementia is a complex and sensitive one and people may well have different and sincerely held views, but there does seem to be a significant body of real world evidence that suggests that therapeutic, or creative lying may sometimes be the best option to keep a person calm and maintain their emotional equilibrium. Ultimately, the decision to lie or not must be made on a case-by-case basis, taking into account the person’s individual needs and circumstances.