Using respectful and empathetic language is fundamental when communicating about a person living with dementia. Person-first language emphasizes the individual's humanity rather than defining them by their medical condition. The words we choose can significantly impact a person's self-esteem and how they are perceived by others. Adopting thoughtful language helps dismantle the stigma and misinformation often associated with dementia.
The importance of person-first language
Person-first language is a communication practice that prioritizes the individual before their diagnosis. For instance, you would say "a person with dementia" instead of "a demented person". This subtle shift in phrasing underscores that the person is a whole human being, not just an illness. Dignity and autonomy are central to this approach, recognizing that a dementia diagnosis is not the defining aspect of a person's life. This is especially important as dementia can manifest differently in every individual, affecting personality, memories, and abilities in unique ways.
Language and stigma
Historical and casual language surrounding dementia has contributed to harmful stereotypes and stigma. Terms like "senile" or "empty shell" reduce individuals to a series of deficits and dismiss their life experiences. Such words can diminish a person's self-worth and create a sense of hopelessness. Respectful language counters these negative narratives by focusing on abilities and promoting a sense of worth and engagement. It's a proactive way to change public perceptions and create a more inclusive environment for people with dementia and their families.
Best practices for respectful communication
When referring to a person with dementia, consider the context and your relationship. While using their name is always the most personal and respectful approach, other phrases are appropriate for general discussion.
- Name First: Refer to the individual by their name (e.g., "Mary" or "Mr. Johnson").
- Person Living with Dementia: Use this term to emphasize that the person is still actively living their life.
- Person with a Diagnosis of Dementia: An accurate, clinical term that separates the individual from the condition.
- "My dad, who has dementia": A simple, descriptive phrase that is both respectful and informative.
Terms to use vs. terms to avoid
Using the right terminology is vital for maintaining respect and dignity. The table below contrasts helpful language with harmful and outdated phrases.
| Respectful Language (Use) | Stigmatizing Language (Avoid) |
|---|---|
| Person with dementia | Demented person |
| Person living with dementia | Sufferer, victim, afflicted |
| Changes in behavior | Difficult, aggressive, challenging |
| Living alongside someone with dementia (for a caregiver) | Burden, burden of caring |
| "Mary, who has Alzheimer's disease" | Vacant dement, empty shell |
| "My father, who is living with dementia" | Not all there, fading away |
Why avoiding stigmatizing language matters
Using dehumanizing language can have real consequences for individuals with dementia. The Mayo Clinic notes that a dementia diagnosis changes some things, but not everything or all at once. Erasing a person's identity by labeling them with their condition can negatively impact their mental and emotional well-being. This is not merely an issue of political correctness; it is a matter of basic human rights and ethical care.
Moreover, the language we use influences public perceptions of dementia. When media and everyday conversations rely on negative stereotypes, it reinforces myths that hinder understanding and support. By promoting accurate and sensitive language, everyone can help foster an environment where people with dementia feel valued and included.
What to consider when communicating directly
When speaking directly to a person with dementia, communication strategies go beyond vocabulary. They include showing empathy, patience, and focusing on non-verbal cues.
- Use simple sentences: Keep your language straightforward and clear, as complex sentences can be hard to process.
- Be an active listener: Maintain eye contact and give your full attention to show that you are engaged and value what they are saying.
- Validate their feelings: Instead of correcting factual errors, respond to the emotions behind their words. Agreeing with their reality can be more comforting than insisting on your own.
- Offer simple choices: Provide two clear options rather than open-ended questions that might feel overwhelming.
Conclusion
How you refer to a person with dementia is not a trivial matter; it reflects an attitude of respect and understanding. Adopting person-first language and avoiding stigmatizing terms is essential for protecting the dignity of individuals living with cognitive decline. As dementia awareness grows, so does our responsibility to use language that is accurate, empowering, and inclusive. By focusing on the person—their history, personality, and desires—rather than their diagnosis, we contribute to a more compassionate and informed society. This approach benefits not only the individual with dementia but also their family, friends, and caregivers, creating a more supportive environment for everyone involved.
