Dementia may be a disease of the mind, but its effects can be very emotional.
People who suffer from cognitive impairment may experience frequent changes in emotions and have less control over their feelings, according to the Alzheimer's Society —which can make communication difficult.
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“Unfortunately, even the most well-intentioned interactions can lead to… stress or confusion for someone who is experiencing cognitive decline.”
When communicating with a dementia patient, experts say it's important to choose language carefully and avoid certain phrases or questions, including those on the list below.
1. Don't you remember?
According to experts, this question topped the list as the worst question you can ask someone with dementia.
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“It can make them feel inadequate or upset about their cognitive impairment.”
Forcing a person to admit that they don't remember a memory or conversation can make them feel bad, added Christina Chartrand, vice president of Senior Helpers, a Florida-based home care company that often helps out. Patients with dementia.
2. Let me do that for you
One of the hardest parts of having dementia is realizing daily things you can no longer do independently, according to Adria Thompson, a licensed speech-language pathologist in Massachusetts with 10 years of experience in dementia care.
“Rather than 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 continue doing the things they can for as long as possible.”
3. 'You are wrong'
Experts agreed that it is best to avoid arguing or reasoning with someone with dementia, as this will likely make them angry and agitated.
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“Keep the peace,” he advised. “It's better than being right.”
4. Would you like to make plans for next week?
“As patients with dementia 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 elderly families plan and cope. Problems of aging.
“If you expect to do something with them at a certain time in the future, they won't be able to keep track of that appointment.”
To avoid frustration, Rosenstiel recommended making sure someone else can remember or write down the plans, and that those plans don't conflict with activities like medical appointments.
5. 'You seem to be fine'
“Society often has a preconceived idea of what dementia looks and acts like, and if someone doesn't fit that stereotype, it can be tempting to use this phrase as a compliment,” Thompson said.
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“However, this phrase can belittle the individual's daily struggle and experiences.”
6. 'I just told you' or 'You already told me'
Along the same lines as “Don't you remember?”, experts recommend not asking questions or making statements that might upset the person.
“Continually pointing out that someone is repeating themselves can lead to feelings of frustration and self-consciousness,” Frie said.
“It's best to gently redirect the conversation or respond as if it's new information.”
This is especially true in the middle stages of the disease, when patients may have moments when they know their brain isn't working right, according to Jennifer Fink, a California caregiver expert who facilitates support groups for the Alzheimer's Association.
7. How have you felt this week?
This might seem like a natural question if it’s been a week since you visited a loved one or friend and you’re trying to catch up.
But it could do more harm than good, Rosenstiel warned.
“We ask ourselves questions like this all the time, but someone with dementia might not remember how they felt five minutes ago, let alone how they felt yesterday,” she warned.
“They may make something up in an effort to satisfy you, or they may get frustrated or angry.”
8. 'You don't make any sense'
Criticizing the communication of dementia patients can damage their self-esteem and discourage them from speaking up, according to Michael Kramer, a long-term care educator and director of community relations for retirement homes that house seniors with dementia.
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“Being patient and making an effort to understand their perspective helps maintain their dignity and encourages open communication,” said Kramer, who is based in Ontario.
9. Do you remember this?
It's best to avoid asking if the person remembers specific information, such as a name, date or event, as it can put the person in an awkward position and seem like a test, experts said.
“Instead, start by introducing yourself,” Eble suggested, “something like, 'Hi, Grandma, I'm Dana, your granddaughter!' It may feel strange at first, but it will put your loved one at ease by reminding them of their name and the connection you have with them.”
The same goes for events or memories, he said.
Instead of asking them if they remember, start with, “I remember when…” and then continue with your story.
“People with dementia love to remember, but they don't see it as a test of their memory,” Eble added.
10. 'You're being difficult on purpose'
The statement is “hurtful and derogatory,” Kramer said.
“It overlooks the fact that behavioral problems are a result of the dementia itself, not intentional actions,” he said.
“Using empathy and understanding instead of frustration is crucial to managing these situations.”
Labeling a behavior as “difficult” can increase frustration and tension, Frie agreed.
“Understanding that challenging behaviors are often a symptom of the disease can help you respond with patience and empathy,” she said.
11. Using words like “bib” or “diaper”
“As dementia progresses, caregivers may need to start using products to help with incontinence and/or make mealtime easier,” Eble said.
“Sometimes, limited choice is too much effort for a patient with dementia.”
She recommended using positive language for these products, such as “protective underwear,” “cloth,” or “apron.”
12. 'Remember, she died last year, we went to the funeral…'
Remind someone with dementia death of a loved one It can be upsetting because the person is unlikely to retain this information, according to Kate Granigan, a geriatric social worker and president of the Board of Directors of the Aging Life Care Association in Boston.
Instead, she recommended saying something like, “It seems like you're thinking a lot about Uncle Harold today. Do you have any favorite memories from when you were a kid?”
13. 'That's not how it happened'
“Dementia can cause confusion and altered perceptions of events,” Kramer said.
“Correcting someone harshly can increase their distress and confusion.”
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Instead, it's better to validate their experiences and gently guide them rather than insist that they are correct, the expert recommended.
14. Do you want? [insert activity]?'
In some cases, framing activities in the form of a question can cause confusion in a patient with dementia, according to Eble.
“If you are the primary caregiver in charge of your loved one's bathroom, shower, feeding, or sleeping schedule, instead of asking 'Do you want to?' start with 'Let's go to the [bathroom, shower, kitchen]”, he recommended.
“Adding that touch of direction will help keep your schedule on track.”
15. What would you like to wear today?
Open-ended options can leave a dementia patient confused or frustrated, Rosenstiel said.
A more productive question might be, “Here are a red sweater and a blue sweater. Which one would you rather wear?”
“However, sometimes a limited choice is too much effort for a patient with dementia,” the expert said.
16. 'Grab your coat and shoes, grab your bag and meet me at the door'
Long sentences with multiple parts or commands can be overwhelming and confusing for someone with dementia, according to Granigan.
“Pause between each one and guide the person through the task if necessary before starting the next one.”