Language is important.
Whether we realize it or not, the way we speak about people reflects our beliefs about them and ultimately affects how we treat them. Whether we are aiming for a community-wide culture change or simply looking for a way to better support a person living with dementia, language matters. So let us start by changing the way we talk about them.
Consider these words too often used to describe people living with dementia in long-term care:
He is a “behavioral problem.” That person is “a flight risk.” She is “combative with care.”
These labels are more than just counter-productive. They attach negative stigma to a person already having a hard time. The language we use to describe people can create unnecessary biases, which can affect the care they receive and even their overall quality of life. If we immediately conclude that a person is “difficult” or “disruptive,” can we really say we are putting in the work necessary to provide them with the care and support they deserve?
Changing the way we talk about people living with dementia is an important step towards honoring them as individuals. In my 20 years at St. John’s Home, I can think of dozens of elders who we were able to make more comfortable and content once we looked beyond those preconceived attitudes and truly worked to get to know them. That deep knowing is essential as it provides us with the knowledge we need to promote their well-being.
One such success story is that of Dan, a former resident with vascular dementia “with behaviors.” At his previous residence, Dan was described as a resident with “frequent anxiety and restlessness, at times having verbal outbursts and striking out.” To us, he was a college-educated man who had an important supervisory role throughout his career. He was a husband, a father and a military veteran. We knew that when he lived at home, he enjoyed tinkering around in his workshop, watching car races and westerns on television, and eating chocolate ice cream.
We also discovered — through conversations with his family and observing him during his first days living with us — that Dan was uncomfortable around too many people and disliked loud noises. Rather than labeling him as someone with behavioral issues and trying to react to conflicts as they arose, we took a proactive approach to ensure Dan and our staff had the resources and systems in place to make him comfortable. We worked with his family to place a work desk in his room with forms, pens, clipboards, a phone book and magazines focusing on his favorite hobbies. We scheduled walks outside in the afternoon and trips to our ice cream shop, as well as times for him to listen to music or take a nap. Above all, we were sure to ask his opinion on things and give him choices, enabling him to retain a sense of independence in his life.
Setting up residents like Dan for success in long-term care takes a lasting and focused commitment. My role as a dementia quality of life specialist is definitely a unique one. I am fortunate that St. John’s appreciates the importance of having someone dedicated to monitoring the nuances of a disease that affects roughly 75% of residents. In many ways, I am like a detective brought in to support households throughout our community who are facing challenges. However, like any good investigator, I work best in collaboration with a team of other experts.
My job is to work with primary care partners and clinical support members to look at distress being exhibited by an elder with dementia and try to find the need being expressed. Is it an unmet physical need, like hunger? Are they experiencing pain? Feeling frustration? Who is this person and what is important to them? We pool our collective knowledge and brainstorm ways to meet their needs. I offer suggestions for different methods of communication, propose new ways to approach the situation, and draw from my background in therapeutic recreation to look for creative ways to provide meaningful activities.
The truth is that I am one of a handful of dementia experts who make up an elder’s daily care team. This team helps residents navigate day-to-day life living in a nursing home.
Our philosophy of “language matters” ultimately led us to the creation of our Beyond Memory program. Families in the community are seeking memory care residences, wishing for the best care possible for their loved one. Yet we are keenly aware that we cannot “fix” an elder’s memory. What we care for is the person, and we aspire to provide them with a quality of life that transcends a need for memory — a life that allows them to continue to find meaning and experience joy.
In pursuit of that goal, we must know our elders deeply in order to provide the elements that will bring joy. From the smallest moment, such as how they prefer their coffee, to a larger experience like attending a concert, we can only achieve it when we truly see the person, not the disease.
It all starts when we honor them with our language.
Mimi DeVinney is the dementia/quality of life specialist at St. John’s Home in Rochester, NY. After 20 years as a therapeutic recreation specialist, she now focuses specifically on elders living with dementia and their care partners.