Facing the Reality of a Dementia Diagnosis
Dealing with a dementia diagnosis is difficult for everyone involved. People who receive a diagnosis might feel confused, distressed, or even deny the condition of their memory loss altogether. Meanwhile, their families typically experience feelings of sadness, worry and grief that their loved ones with dementia are changing before their eyes.
One of the most challenging aspects of dementia is communication. Communication styles and habits that worked with a loved one before will require adjustments based on their stage of their dementia. In some cases, people with dementia might be in denial about their condition, saying their forgetfulness was a “one-time incident” and they don’t need help. Others with dementia might feel more irritable or ask for more support.
While families try to make sense of these changes, they’re processing their own heavy emotions, and they often don’t know the right thing to say or do. It’s common for memory care specialists to hear families say their loved one with dementia has “lost their mind,” “can’t do anything” — or worse — that “they’ve gone crazy.” While well intentioned, some families might use infantilizing language toward their loved one with dementia, which only makes the individual feel worse.
To ease some of the challenges that come with caregiving for a loved one with dementia, positive language is key. With the right approach to communication, dementia can be managed effectively at all levels and you can help improve your loved one’s overall quality of life.
Here are some simple language shifts and other tips on how to communicate with someone with dementia.
Say This, Not That
Don’t say: “Did you remember to take your medication?”
What to say instead: “I see you didn’t take your medication. How can I help you?”
Why it matters: Many people with dementia often feel embarrassed when they’ve realized they’ve forgotten something or someone. By remaining patient and calmly stating your point, you can help your loved one feel more supported and at ease.
Don’t say: “You can’t do that by yourself”
What to say instead: “I can help you with that”
Why it matters: People with dementia are often underestimated by their abilities. Offering help instead of taking over their task shows that you respect their abilities while also providing them with the support they need.
Don’t say: “I will do it”
What to say instead: “I will do it with you” or “Can I do this with you?”
Why it matters: Those with dementia often struggle with losing their independence and want to know that they have a say in the decisions made about their lives. This simple language signals just that. You’re honoring their independence and dignity while also offering support.
Don’t say: “Calm down”
What to say instead: “I know this must be hard for you”
Why it matters: It’s critical to use positive language to express concerns as well as give your loved one time to process their situation. This language shift shows that you are validating your loved one’s feelings and experience.
Don’t say: “Your (loved one) died”
What to say instead: “Can you tell me about (their loved one)?”
Why it matters: Caregivers refer to this language shift as therapeutic fibbing. People with dementia, especially those in advanced stages, have a harder time processing loss. In many cases, it is more beneficial for the person with dementia to reminisce about positive memories from their past rather than try to understand their current reality.
Don’t say: “Hey, sweetie!”
What to say instead: “Hey, (real name)!”
Why it matters: Unless your loved one gives you consent, using a nickname without their permission can make some people with dementia feel belittled. Saying their real name is a sign of respect.
Don’t say: “You need to wear a diaper”
What to say instead: “I have some protective undergarments for you”
Why it matters: Words like “diapers” and “bibs” are infantilizing. Making simple language changes protects the dignity of a person with dementia.
Don’t say: “You seem under the weather”
What to say instead: “How are you feeling?”
Why it matters: Idioms and slang words can be extremely difficult for people with dementia to follow. Using clear, simple language is essential to ensuring your loved one understands what you are saying.
Communication Beyond Words
It is not just what you say to someone with dementia, but how you say it. Keep these nonverbal communication tips in mind when talking to someone with dementia:
- Smile: Positive, warm facial expressions can help people with dementia feel more comfortable and safer.
- Tone Matters: Whatever you say, speak softly, especially when your loved one with dementia feels more irritable. Do not raise your voice as it can make matters worse.
- Use Demonstration Cues: Expressive hand gestures and body language can help with signaling common tasks like eating, drinking, walking and sitting.
- Lean on Photo Albums: Pictures can be a great way to communicate with a loved one with dementia, as they help people reminisce about some of their most positive memories.
- Consider Signage: Consider signage for communicating with someone with dementia at a later stage, as the symbols can be easier for them to process information.
The Power of Positive Language in People with Dementia
Like any other progression of a disease, dementia presents new challenges at every stage. As a caregiver, it’s important to meet your loved one where they are in their journey. By understanding how to communicate with someone with dementia, you can minimize frustration for both you and your loved one and help reduce the dementia stigma. Most importantly, you can improve your loved one’s overall quality of life and well-being.
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