In our blog post titled “My Name is Not Early Onset Alzheimer’s Disease”, we discussed the importance of learning and understanding someone’s history to ensure they maintain their personhood instead of being defined by their disease. We also asked the question of how care partners, family members, friends, healthcare professionals, and communities can change their perspective. This can be accomplished by considering the power behind words we use when talking about those who have been diagnosed with the disease.
The words used to talk or write about those living with early onset Alzheimer’s disease has a significant impact on how they are treated by those around them. Additionally, the words we use have a strong influence on beliefs and opinions formed by our communities.
Consider for a moment how you feel when negative language is used to describe you or someone you love. Most likely, those words have a direct impact on your mood and self-esteem. Now imagine you’ve been diagnosed with early onset Alzheimer’s disease. With one diagnosis, you are no longer defined or recognized as the unique individual you’ve been since the day you were born. Instead, you are defined by your diagnosis and symptoms. People begin talking about you—not necessarily to you.
Knowing the facts about the disease is vital. Making assumptions about a person’s abilities based upon stereotypes of the disease, guarantees a negative outcome. While early onset Alzheimer’s disease can affect language skills, planning, problem solving, and sensory perception, there are many symptoms that may be experienced throughout the disease process, yet each person experiences the disease differently. Every person’s brain stores their unique personality, characteristics, and experiences. The truest statement ever spoken was, “When you meet one person with the disease, you’ve met one person with the disease.”
Typically, the language used to describe early onset Alzheimer’s disease focuses on the negative aspects of the disease. The words used often focus on the losses experienced. This leads to continued stereotypes and approaches to care that focus on weaknesses instead of one’s continued abilities and strengths.
In the last two months of Gayle’s life, she experienced a medical crisis that resulted in a lengthy hospital stay and subsequent placement in a memory care facility. While I understood the need for assessments and medical language to describe her condition, I did not anticipate her diagnosis and decreased abilities would become her new identity. There were many people who didn’t talk to her, they talked about her. The terms used to describe her were often “stinging”. Rarely were people discussing Gayle, the person. Her identity became an ever-growing mountain of terms and words that came across as demeaning.
A shift is beginning to happen and people are using more sensitive and honoring language, but there is still much education to be done. The language used to talk about those living with early onset Alzheimer’s disease, their care partners, and the disease itself, must be:
- Accurate
- Empowering
- Healing
- Inclusive
- Non-stigmatizing
- Respectful
The Gayle Wells Foundation for Early Onset Alzheimer’s & Care has created a document titled Language Guidelines: Reframing for Respect that provides a list of terms often used to describe those living with the disease and their care partners. In the document, we provide a chart that details language to be avoided, language of respect, and reasons for the change.
We invite you to share with us in the comments section below, any words or terms that have been used to describe you or your loved one, that you found offensive or demeaning. We want to continue to build our language guidelines with input from our early onset Alzheimer’s community.