Written by: Emily Sutherland
“Dehumanizing always starts with language.” —Brené Brown
Our words matter. Whether we are nurturing a child’s development or communicating with anyone in our lives, choosing words that clearly communicate respect and compassion benefits every single relationship in our lives. Yet the moment an individual receives an Alzheimer’s diagnosis, foreboding phrases have become normalized – in medical settings, families, and communities – and we may not realize how our words might diminish, stigmatize, or even dehumanize people with the disease.
Families routinely hear their family members being spoken about by medical personnel as if they aren’t there or do not have feelings. Yet, just as any human being deserves to be spoken to and spoken about with dignity and respect, individuals with Alzheimer’s disease and dementia are no exception.
Alzheimer’s is commonly described as “the long goodbye” becaus of the incremental grief that comes with watching someone you love gradually lose their ability to recall the memories you once shared, to communicate effectively, and to maintain their independence. Perhaps this phrase is one best saved for private conversations outside of the presence of the person with the disease.
When talking about “the long goodbye” in the presence of someone still in the early phases of Alzheimer’s or dementia, this understandable expression of a care partner’s sense of loss can unintentionally shift the focus onto the coming deficits and eventual death. It is important for care partners to acknowledge and process the grief that comes with this disease. Of equal importance is honoring the person and treasuring the time still left with them. After all, they still have emotions and long for their remaining days to be about more than simply saying goodbye. The needs and realities of both care partners and individuals with the disease deserve language that honors their emotions and experiences.
We also commonly hear that individuals with Alzheimer’s have “lost their identity” when, in reality, a person’s humanity can never truly be lost. Maybe they no longer remember names, or the job functions they once did, or the roles they fulfilled years earlier, but one’s true identity is never separate from their existence. Let’s always strive to see the person with the disease with the same respect that we would have decades earlier when they were in the prime of their life.
Another phrase often used to describe a person’s difficulty with communication as “word salad.” While Alzheimer’s clearly impacts a person’s ability to transfer their thoughts into words, imagine how much courage it takes for a once-brilliant surgeon, or English teacher, or business owner, to try unsuccessfully to communicate when it used to be so effortless. Rather than “word salad” (which emphasizes the deficiency), let’s consider emphasizing the intense effort they are making and refer to the individual’s speech as an attempt to communicate. After all, difficulty with communication and memory retrieval in no way removes a person’s longing for connection, empathy, and respect.
What many people – even medical professionals – refer to as “behaviors” are, almost without fail, desperate attempts to communicate unmet needs or frustration because the individual feels misunderstood. Relearning how to communicate with someone with Alzheimer’s is arguably a caregiver’s most important challenge as the disease progresses. Yet their humanity is fully intact and, therefore, can still be honored in the terminology we use. Perhaps referring to “behaviors” as “unmet needs” more effectively honors their feelings, contextualizes their actions, and serves as a reminder to everyone that the person with the disease never stops having needs that are difficult for them to communicate appropriately.
The former administrator of a memory care facility in Houston, Texas, shares a powerful example of one daughter who reframed the way she communicated with her mother. On that day, the daughter had become discouraged trying to connect with her mother. Her mother woke up convinced that it was her wedding day. So that day, rather than trying to convince her mother that it wasn’t her wedding day or reminding her that her husband had died years earlier (when the daughter was still a young child), she decided to join her mother in reliving her wedding day by asking questions and celebrating her mother’s joy.
Her mother was an excited bride in those moments and shared all about the events surrounding her big day. She told the story of her groom going out of town to find work during their engagement, and how she kept having to move the wedding date until her husband-to-be was finished with the project he had taken on. Her mother expressed gratitude that he was willing to work so hard to support them financially, yet how hard it was to keep moving their wedding date. She went on to describe the dress she wore, what they were planning to eat, and other details the daughter had never known about her parents’ wedding day.
At one point, her mother looked down at her shoes and exclaimed, “Oh these shoes will never do for my wedding day!”
Wisely, the daughter told her mother not to worry, and that they would make sure she had the right shoes for today. Without lying or derailing the conversation with her mother, the daughter went where her mother was. She reassured her, engaged with her, and as a result, helped her mother enjoy her wedding day all over again.
The daughter later stopped by the administrator’s desk, full of mixed emotions, and exclaimed, “I hate this disease! But… I also just learned things about my father and mother that I’ve never known until today.”
The challenges and pain points experienced by individuals with Alzheimer’s disease are undeniable. But this mother-daughter story offers one simple example of the way one family member’s thoughtful response forged new memories. The result was a sense of connection and shared joy rather than frustration and pain.
The way we communicate with people living with Alzheimer’s has a powerful effect on their well-being. It is imperative to never lose sight of a person’s humanity and keep finding thoughtful ways to connect with them where they are. Engaging with the person compassionately with respectful language preserves their dignity. And every human being deserves to be treated with dignity and respect, regardless of their circumstances.
The next time you hear someone comment that a person with Alzheimer’s “isn’t in there” anymore, think again. That human being is absolutely in there. People with Alzheimer’s experience a full range of emotions, yearn for connection and long for affection as much as they ever have. Mindfulness around the language we use can create a powerful shift in the atmosphere for people with Alzheimer’s and dementia who need to feel loved and supported yet perhaps don’t have the language needed to ask for it.
The Gayle Wells Foundation for Early Onset Alzheimer’s has a created a document Language Guidelines – Reframing for Respect . Please share with your communities and use this as a guide to ensure dignity and respect are used in our communications with those who have this disease.
Emily Sutherland is a career writer and founding board member for the Gayle Wells Foundation for Early Onset Alzheimer’s Disease. The Gayle Wells Foundation is actively working to destigmatize early onset Alzheimer’s disease and other dementias, and our team of clinicians is actively serving individuals impacted by the disease and their care partners. For more helpful resources and services, visit http://gaylewells.org.