Most of us learn not to lie to our parents from a very early age, but if your folks suffer from dementia, lying might actually be the most caring thing you can do. More than 90 per cent of surveyed geriatric care managers recommend caregivers use benevolent half-truths as part of an overall strategy of caring for people with dementia.
“We call them ‘fiblets’ or therapeutic validation,” explained Kathryn Cherkas, director of programs at the Alzheimer’s Association’s California Central Coast Chapter.
Unlike most lies, the goal of telling fiblets is not selfish. “You’re validating their reality… You would do this when it’s in the best interest of the person in your care — not for pushing your own agenda or manipulating a situation,” Cherkas said.
Lying for practical purposes
As dementia progresses through its stages of memory loss, disorientation, and confusion, it usually becomes impossible for the person with dementia to manage their day-to-day. But they often don’t grasp the extent of their disability (or recognise it all) insisting that they’re fine, while making potentially disastrous life decisions, whether it’s driving a car recklessly or giving their bank account information to some jerk selling “survival food” (true story). This is when fiblets become crucial.
You might tell a loved one their car is still in the shop if they insist on driving recklessly, or carefully nudge them toward sensible medical decisions. “If you’re caring for someone who refuses to go to a doctor for a neurological assessment because they’re convinced there’s nothing wrong with them, you could say something like, ‘Our insurance company requires it,’” Cherkas said. “That puts the blame on an outside entity, so not everything is on the caregiver, at least in the mind of the person you’re caring for.”
Learning to say “yes, and” instead of “no, but”
Part of effectively caring for someone with dementia is accepting it. It’s not the kind of disease you fight and come back from. Barring some future medical breakthrough, Uncle Joe will never be the same as he was — a head full of damaged and dead neurons makes it impossible.
“A person with dementia’s reality can be very, very different from your reality,” Cherkas says, “So you have to embrace their reality, because they just aren’t capable of embracing yours.”
Embracing demented reality can mean “playing along” with weird notions instead of arguing about them. Dementia patients who believe strange things probably aren’t just making up stories; they could be having delusions, and even hallucinations, and you’re not going to argue them away. So, if grampa says he used to be the King of Siam, you’re both going to have a better afternoon if you ask him about his throne room instead of arguing that he had been a bus driver. Put those improv skills to use and go along for the ride.
Emotions and dementia
The profound memory distortions that come with dementia can lead to an unstuck-in-time effect. According to Cherkas, “With memory loss comes a sort of spatial uncertainty. The distance between memories becomes very, very blurry, so that’s why you’ll hear a lot of people say things like, ‘Oh no, my mum died!’ even though they are in their 80s and talking about something that happened a long time ago.”
Remembering distant events as if they just happened can be profoundly unsettling, even terrifying, and your job as a caregiver is to try to smooth it out — not to make your loved one “face reality.”
“I cared for a patient who asked where her father was several times a day,” Cherkas said. “Her two daughters were very uncomfortable lying to their mother, so each time she’d ask, they’d say, ‘Your dad died 60 years ago.’ The poor woman would go through that mourning experience over and over, every day. She had a form of dementia, but she did not have minimized emotions. So she would feel her father’s death in just as painful a way as the first time she heard it.”
What are they really asking?
It’s common for people with dementia to ask the same question over and over. Unlike you or I, they probably aren’t trying to elicit information, though; they may be trying to communicating some other need. So if you’ve already answered the question truthfully once, try focusing on the emotions behind it instead of the question itself.
If MeeMaw asks, “What happened to my puppy?” again and again, she could really be asking for the comfort her puppy used to bring her. Or maybe she just wants to talk about how pretty that little rascal was. Saying something like, “Let’s talk about your puppy,” is a much more useful response than, “For the 100th time, she was hit by a truck in 1976.”
If the repeated question is factual, some seniors have found success with Alexa, Siri, and other voice-assistance gadgets. Those things will tell you what day it is as many times as you ask, play the same Bobby Darin song 46 times in a row, and tell stupid jokes all day without getting cranky.
The thin line between lies and truth
None of this advice is meant to give caregivers licence to deceive people with dementia willy-nilly, and it doesn’t apply to professionals, who have different ethical obligations and training than dementia “civilians.” Family caregivers have to balance their needs (it’s a tough thing to do and can be extremely draining) with the well-being and dignity of family members. No matter how far gone someone seems, as a fellow human, you owe them as much honesty and consideration as it’s compassionate to provide.
“It’s an extremely difficult line to walk,” Cherkas said. “Especially when it comes to points of contention — things like talking about a diagnosis, making a lifestyle change, or moving a loved one into a facility. The bottom line, though, is to make the person living with dementia feel validated. To uphold their level of dignity and respect.”