Welcome to Alicia’s monthly advice column where she’ll provide tips on caring for a loved one with —dementia. Alicia Seaver is the Director of Memory Care at Bridges® by EPOCH and is a certified memory impairment specialist. This month’s topic is the ethics of fibbing.
From a young age we are taught that lying is wrong—unethical even— and we should always be truthful and honest. But as we mature we learn that occasionally telling ‘little white lies’ is sometimes the best way to spare someone’s feelings. For example, we wouldn’t dream of telling our friend that indeed, they did pack on a few pounds over the holidays. This balance between wanting to be honest while also sparing someone’s feelings can be especially difficult for caregivers to manage.
As caregivers, we want to be honest with our loved ones so they know to trust us. But when someone has dementia, honesty can also sometimes lead to distress, both for you and the one you are caring for. This leads to an ethical dilemma for many caregivers: is it OK to lie?
When someone is acting in ways that don’t make sense to us, our instinct is often to appeal to the person’s sense of reason—or what we perceive as an objective reality—to get compliance. However, this doesn’t tend to work for a person in the middle or late stages of dementia, who has lost their ability to rationalize. For them, having another person contradicting their logic or reality can be a frustrating, scary or even painful experience.
This means that sometimes, fibbing is the most ethical course of action for a caregiver to take. To prevent agitation in someone with dementia, caregivers are encouraged to tell ‘fiblets’—little lies that will prevent those with dementia from facing uncomfortable truths. Think of it as therapeutic lying: you are shielding your loved one from truths that would incite mental anguish, anxiety, agitation and confusion.
Are you being unfair by not telling them the truth? No. People with dementia do not need to be grounded in reality. Those living with memory loss often forget important things—for instance, that their mother or brother or spouse is diseased. Reminding this person of their loss means reminding them of the pain of that loss. And constantly challenging or correcting someone with dementia often causes them to feel disrespected, stupid, angry, confused, frustrated and hurt. So as caregivers, we need to understand that it is acceptable to alter the truth to protect those in our care who have little or no recognition of reality.
Trying to place yourself in the shoes, or reality, of someone with dementia is key when caring for those with memory loss. It’s now widely recognized that a person with dementia can be said to be inhabiting an alternate world and reality from the rest of us. And rather than try to rip someone with dementia out of their world, we do our best work when we hop into theirs. This idea follows from the approach of Habilitation Therapy (HT), a caregiving strategy that the Alzheimer’s Association now considers to be a best practice. HT tells us that someone with dementia cannot leave their reality to be with us, no matter how much we may want them to. To be with them, we must travel to their world by tapping into what they may be experiencing. We must respect—not negate—their reality.
Despite your best efforts to interact with a person living with dementia in their reality, you may still be met with anger, agitation and anxiety. People with dementia have a way of knowing intuitively when someone is lying to them, and they will often demand honesty. But remember, we must weigh the damage that telling the truth will do, versus telling a fiblet.
Remember, honesty does not require that you always be completely truthful and factual—honesty can also be interpreted as emotional sincerity. So be emotionally sincere when communicating with someone with dementia, and respond with empathy to that person’s definition of reality. As caregivers of loved ones with dementia, all we can do is try to connect with them as they are, here and now—wherever that may be in their world.
If there is a topic you would like Alicia to discuss, please send suggestions to [email protected].