Phasing out the ‘D-word’

As I roamed the meeting rooms and halls of the Alzheimer’s Association International Conference in Philadelphia last week, I kept hearing a word — dementia — I’ve come to loathe as someone with early Alzheimer’s.

The use of this term goes back as far as the late 1500s, when it referred to insanity. It’s an inaccurate, outdated, and stigmatizing term that I and others living with cognitive impairment want to see retired permanently. Not only is it offensive, but it actively holds back early diagnosis, effective care, and faster research progress towards new, life-changing treatments.

I’ve felt the stigma firsthand. On more than one occasion, health care professionals or researchers referred to me as “demented” or “having dementia.” Those utterances made me feel hurt, judged, and counted out. And it certainly didn’t make me want to return to that doctor’s office or take part in a long, demanding clinical trial.

Sentiments like that make a difficult problem even more intractable. According to a recent survey, 8 in 10 people over age 65 associated stigma with the word “dementia.” If it’s already difficult to get people to seek treatment earlier, why use language that makes it even harder?

No one should feel unwelcome or criticized in their doctor’s office. People should be able to seek help for memory problems or cognitive impairment, knowing they’ll be treated with dignity and respect. It’s in the Alzheimer’s community’s power to make sure that happens.

That’s why I’m eager to announce the Initiative to Change the “D-Word.” This nonprofit organization is bringing together a coalition of advocates, professional societies, companies, and policymakers to work to eliminate the words dementia and demented from the lexicon of Alzheimer’s disease and cognitive impairment, reducing stigma and increasing accuracy around these conditions.

The first goal of the initiative is to raise overall public awareness about the stigma around the “D-word” and the need for using alternative language. Just ask those at greatest risk. In the survey I mentioned earlier, almost half of older adults pictured someone with dementia as having difficulty performing everyday tasks, and the top three emotions associated with dementia were confusion, helplessness, and isolation.

It’s essential to educate providers and researchers about this effort. People often hesitate to seek help for changes with thinking or memory because they fear how a doctor or other clinician might treat them. It’s part of the reason why people delay seeing a doctor for multiple years, leading to a delayed diagnosis. At every step, the stigma of “dementia” throws up barriers.

There are many causes of cognitive impairment, from Alzheimer’s disease to depression and diminished blood flow to and in the brain. “Dementia” covers up these key differences with a single catch-all term. That’s simply not helpful. Clinicians, researchers, and others need to use more precise language that equips people to move forward, rather than holding them back with a term from yesteryear.

When a diagnosis is delayed or inaccurate, an individual has fewer chances to benefit from treatment, take part in a clinical trial, or fully benefit from innovations in treatment options. Many of the newest drugs now available or in trials work best at the earliest stages of the disease. The challenge of finding volunteers in these early stages is a major reason that progress has been so slow, for so long.

I was fortunate to have received a relatively early Alzheimer’s diagnosis. Far from an ending, it opened a new chapter of my life. I got to know other people living with the disease. I got involved with the advocacy community. I learned that life doesn’t stop with a diagnosis; in fact, it’s just the opposite.

Millions of Americans deserve these same benefits. To make that happen, the journey toward diagnosis needs to be as easy as possible. And that depends on a shared effort to break down stigma so people can get the support and care they need, find trial opportunities, and approach their next steps feeling empowered and well-informed.

Changing how we talk can change how we fight Alzheimer’s disease and cognitive impairment — unleashing earlier diagnosis, better care, and improved lives for people with these conditions.

Mike Zuendel founded the “Initiative to Change the ‘D-Word'” and has served on the Alzheimer’s Association’s Early-Stage Advisors Group, the Global Neurosciences Institute patient council, is a champion for the Voices of Alzheimer’s organization, and sits on the Alzheimer’s patient advisory board of the Center for Study on Clinical Research Participation and the board of directors of the Banner Alzheimer’s Foundation.