Dementia may be a disease of the mind, but its effects can be highly emotional.
Those suffering from cognitive decline can experience frequent changes in emotions and have less control over their feelings, according to the Alzheimer’s Society — which can make communication difficult.
“Most people do not have regular interactions with those living with dementia, so it can be hard to know the do’s and don’ts of what to say and how to behave,” Dana Eble, outreach manager for the Alzheimer’s Caregivers Network in Detroit, Michigan, told Fox News Digital.
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“Unfortunately, even the most well-meaning of interactions can lead to stress or confusion for someone experiencing cognitive decline.”
When communicating with a dementia patient, experts say it’s important to choose your language carefully and avoid certain phrases or questions, including the items on the list that follows.
This topped the list as the worst question to ask someone with dementia, according to experts.
“This question can be frustrating or embarrassing for someone with dementia, as memory loss is a central symptom of their condition,” Timothy Frie, a nutritional neuroscientist in Atlanta, Georgia, who studies how traumatic stress causes neuroinflammation, told Fox News Digital.
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“It can make them feel inadequate or upset about their cognitive decline.”
Forcing the person to acknowledge that they don’t remember a memory or conversation can make them feel bad, added Christina Chartrand, the Florida-based vice president of Senior Helpers, a home care company that often helps dementia patients.
One of the hardest parts of having dementia is the daily realization of things that can no longer be done independently, according to Adria Thompson, a licensed speech-language pathologist in Massachusetts with 10 years of experience in dementia care.
“Often, well-meaning individuals might prematurely take over tasks without asking or assessing if they need to, which can diminish the person’s sense of autonomy,” she told Fox News Digital.
“Instead of assuming they can’t do something, it’s more respectful to offer help and let them tell you if they need it — and allow them to still do the things they can for as long as possible.”
It is best to avoid arguing or reasoning with someone with dementia, as it will likely anger and agitate them, experts agreed.
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“People with dementia do not need to be corrected when they believe it’s Tuesday the 13th and not Monday the 1st,” Elizabeth Landsverk, M.D., a California-based geriatrician and founder of Dr Liz Geriatrics, an online education and support resource, told Fox News Digital.
“Keep the peace,” she advised. “It’s better than being right.”
“As dementia patients lose their sense of time, they lose a frame of reference that would make this question meaningful to them,” said Leonie Rosenstiel, president of Dayspring Resources, Inc., in Albuquerque, New Mexico, which helps families of elders plan and cope with the problems of aging.
“If you expect to do something with them at a particular time in the future, they will not be able to keep track of this appointment.”
To prevent frustration, Rosenstiel recommended ensuring that someone else can remember or write down the plans, and that those plans don’t conflict with activities such as medical appointments.
“Society often has a preconceived notion of what dementia looks and acts like, and if someone doesn’t fit that stereotype, it might seem tempting to use this phrase as a compliment,” noted Thompson.
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“However, this phrase can belittle the individual’s daily struggle and experiences.”
It’s important to be aware that symptoms and experiences can vary greatly among individuals with dementia, Thompson told Fox News Digital.
Along the same lines of “Don’t you remember?” experts recommend not asking questions or making statements that are likely to upset the person.
Continually “pointing out that someone is repeating themselves can lead to feelings of frustration and self-consciousness,” said Frie.
“It’s better to gently redirect the conversation or respond as if it’s new information.”
This is especially true in the middle stages of their disease, when patients may have moments when they know their brain isn’t working right, according to Jennifer Fink, a caregiver expert in California who facilitates support groups for the Alzheimer’s Association.
This might seem like a natural question to ask if it’s been a week since you’ve visited a loved one or friend, and you’re trying to catch up.
Yet it could do more harm than good, Rosenstiel said.
“We ask each other questions like this all the time, but someone with dementia might not remember how they were feeling five minutes ago, let alone how they felt yesterday,” she warned.
“They might make something up, in an effort to satisfy you, or they might get frustrated or angry.”
Criticizing dementia patients’ communication can damage their self-esteem and discourage them from expressing themselves, according to Michael Kramer, a long-term care educator and director of community relations for retirement residences that accommodate seniors with dementia.
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“Having patience and making an effort to understand their perspective helps to maintain their dignity and encourages open communication,” said Kramer, who is based in Ontario.
It’s best to avoid asking if the person recalls specific pieces of information, such a name or date or event, as it can put the person on the spot and feel like a test, experts said.
“Instead, start by introducing yourself,” Eble suggested — “something like, ‘Hey, Grandma, it’s Dana, your granddaughter!’ It might feel strange at first, but it will put your loved one at ease by reminding them of your name and connection to them.”
The same goes for events or memories, she said.
Instead of asking if they remember, start with “I remember when…” and then continue with your story.
“Those with dementia love reminiscing, but don’t frame it as a test of their memory,” Eble added.
This phrase is “hurtful and dismissive,” Kramer warned.
“It overlooks the fact that behavioral challenges are a result of the dementia itself, not intentional actions,” he said.
“Using empathy and understanding instead of frustration is crucial in managing these situations.”
Labeling behavior as “difficult” can increase frustration and tension, Frie agreed.
“Understanding that challenging behaviors are often a symptom of the disease can help in responding with patience and empathy,” he said.
“As dementia progresses, caregivers may need to start using products to help with incontinence and/or to help make meal times easier,” Eble pointed out.
She recommended using positive language for these products, such as “protective underwear,” “cloth” or “apron.”
Reminding someone with dementia of the death of a loved one can be upsetting, as the person is likely not retaining this information, according to Kate Granigan, a geriatric social worker and president of the Aging Life Care Association Board in Boston.
“This can trigger a grief response over and over again, as if the information is newly learned,” she told Fox News Digital.
Instead, she recommended saying something like, “It seems like you are really thinking about Uncle Harold today. Do you have a favorite memory from when you were kids?”
“Dementia can cause confusion and altered perceptions of events,” said Kramer.
“Correcting someone sharply can increase their distress and confusion.”
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Instead, it’s better to validate their experiences and gently guide them rather than insisting on correctness, the expert recommended.
In some cases, phrasing activities as a question can cause confusion for a dementia patient, according to Eble.
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“If you’re the primary caregiver in charge of your loved one’s toileting, showering, feeding or sleeping schedule, instead of asking ‘Do you want to,’ lead with ‘Let’s go to the [bathroom, shower, kitchen],’” she recommended.
“Adding that bit of direction will help maintain their schedule.”
Open-ended choices may leave a dementia patient confused or frustrated, noted Rosenstiel.
“They also might have no idea whether they’ll need a sweater or not, because they don’t remember what they heard on a weather report an hour ago,” she told Fox News Digital.
A more productive question might be, “Here’s a red sweater and a blue one. Which one would you rather wear?”
“Even then, sometimes a limited choice is too much of an effort for a dementia patient,” the expert said.
Long sentences with multiple parts or commands can be overwhelming and confusing for someone with dementia, according to Granigan.
“It is more successful to provide one short direction or piece of information at a time,” she told Fox News Digital.
“Pause between each and guide the person through the task if needed before starting the next.”
