Alzheimer's: Fighting the Stigma with Words

The History of Language Around Alzheimer’s

At the turn of the last century, before Alzheimer’s disease was named as a specific disease, dementia was predominately thought to be a condition of aging called senile dementia. When Dr. Alois Alzheimer discovered the hallmark plaque and tangles in the brain in a younger 50-year-old woman, it led to the naming of a new disease specifically for people under 65: presenile dementia.

It wasn’t renamed Alzheimer’s disease until 1910,and it wasn’t until the 1970s that the age distinction was dismissed after it was shown that Alzheimer’s itself was the most common cause of dementia.

While this is a lot of medical jargon, it does tell you one important thing about the naming of Alzheimer’s: it has long included some form of age delineation. For most of its history, Alzheimer’s was considered an expected part of aging, and became easy to dismiss and may have contributed to the hurtful stereotype of the forgetful, confused senior. 

While the chances of getting dementia increase with age, it is not an inevitable part of aging and should not be dismissed because of it. Allowing ageism to cloud the lens through which we view dementia creates a missed opportunity to support people living with dementia and the fullness of their lives — past, present and future.

Why It Matters 

Changing how we view dementia can change how we treat persons living with the diagnosis. There is a growing idea that framing dementia as a disability will force us as a society to begin to think about adaptations to better support those diagnosed. Similar to how we build ramps for those whose disability requires a wheelchair, we can build “cognitive ramps” for those whose memory and thinking are affected by dementia. 

And just as our language changed as a society in the 1970’s with the disability rights movement, so does our language need to change around dementia. Speaking about your family member with dementia as if they aren’t there or describing the disease process as “fading away” only serves to delete their individual identity. Referring to people living with dementia as “victims” or “patients” is also wrong. Although dementia can be a difficult diagnosis to cope with, it should never define the person. The only time a person should be called a “patient” is when they are inside of a doctor’s office or hospital.

Also, careful consideration needs to be made when communicating directly with someone who has the disease. While many living with dementia may not mind a gentle reminder when memory loss gets in the way, always rushing them to complete sentences, and assuming they don’t remember things because they are slower to remember, are easy-to-miss actions that ultimately chip away at their sense of self. It may also make it easier for you to see them as only a care burden, overlooking that they are people who still very much have thoughts, interests, feelings and contributions to make.

What You Can Do

The Dementia Action Alliance, an organization giving voice to people diagnosed with dementia, recommends using words to describe your role like “care partner” rather than “caregiver,” or instead, just call yourself by your relation (spouse, friend, family member, daughter/son, loved one). Words like caregiver and custodian imply a burdened, one-way relationship. 

It’s also important to make the distinction that the condition may not be hopeless, tragic or burdensome. Yes, it can be challenging, stressful and life-changing, but it should never be seen as the end of someone’s life. It’s an evolution. The way we talk about and name things must progress with the people we care about in mind. Words have power.

More from Brookdale

If you want to learn more about how to support those living with Alzheimer’s and dementia, we can be a resource. We’ll help your loved one receive the attention, respect and love they deserve. Take a look at our Alzheimer's and Dementia Care articles. 

Have questions about our senior living options? We’re always happy to talk! Reach out to a Brookdale representative today.

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