November 14, 2019

Alzheimer's: Fighting the Stigma with Words

About Brookdale Senior Living

Brookdale Senior Living offers multiple care levels for seniors in more than 600 communities nationwide. Brookdale helps you find the right care plan for yourself or your loved one. With amenities such as transportation services, salons and private dining rooms and activities such as gardening, fitness classes and trivia nights Brookdale caters to a wide range of interests and needs.

As of this year, there are about 5.8 million people living with Alzheimer’s in America. For such a common condition, there is much we are still learning about Alzheimer’s, but there’s one thing we know for sure: the impact it has on the lives of those we love the most.

One in 10 people over age 65 have Alzheimer’s, and that number is projected to grow. For that reason, it’s more important than ever for us to think about how we approach dementia and that includes the language we use.

Because a dementia diagnosis is a sensitive topic for many, it’s often spoken about in hushed tones. For those living with a form of dementia, tip-toeing around the subject doesn’t help. Discussing it openly and with positive language is the strongest tool available when it comes to changing the stigmas and stereotypes about the disease.

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.

^{_{The above content is shared for educational purposes only. You must consult your doctor before acting on any content on this website, especially if you have a medical condition. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Never disregard professional medical advice or delay in seeking it because of something you have read on our site.}}