Talking about dementia

How the words used to describe the dementia experience can lead to a more person-centred approach to safety and care 

Language is power. The words we choose to describe ourselves, intentionally or unintentionally, can steer how others understand and interact with us. This is particularly true in health care, where many people don’t grasp the complexities and nuances of certain conditions until they are living with a diagnosis themselves.  

 Language in the healthcare sector is changing, with an increasing number of healthcare professionals becoming aware of how words can influence care. Once-standard terms used to describe developmental disabilities and mental health conditions are now rightfully treated as derogatory slurs. Cancer advocates are moving away from “battle” metaphors that unfairly put the onus for “fighting” the disease on people undergoing treatment. The same is true for people living with dementia, who often face considerable stigma as others talk about their illness in a way that doesn’t reflect their actual lived experience.  

 As organization that works at the intersection of health care and public safety, MedicAlert takes care to use the most current language possible to ensure it can advocate for subscribers and make them feel comfortable and respected when using services like the Safe & Found program. 

 “We want to empower people, not demoralize or stigmatize them,” says Stefanie Tan, MedicAlert’s Associate Vice President, Research & Programs. “This is a service that will keep them safe. It shouldn't give any negative connotation to the diagnosis in itself.” 

 Focusing on the person, not the diagnosis 

Language updates within dementia care are primarily focused on what is called “person-centred” care – those being treated are seen as unique individuals rather than solely through the lens of their diagnoses. The most significant language shift comes in avoiding calling the person in question a “dementia patient” and instead as a “person living with dementia.” It may feel like an insignificant designation to outsiders, but to the people affected, the new wording can restore a sense of dignity and humanity.  

 “A lot of late-life conditions like dementia, incontinence and frailty are all stigmatizing conditions which automatically frame the individual in sometimes a quite pejorative way,” says Dr. Adrian Wagg, Chair in Healthy Ageing, and Director and Professor in the Division of Geriatric Medicine at the University of Alberta. “It's about realizing older adults are not all the same. They’re people with very different backgrounds, upbringings, perspectives and beliefs and should be treated as individuals.” 

 Even older adults who do not experience dementia symptoms are rejecting descriptors like “senior” or “geriatric,” which place more emphasis on their age than their personal qualities. Other examples of these changes in language include moving from “caregiver” to “care partner” in reference to family members caring for loved ones as a means of centring the person living with dementia as a participant in their own care. On a more general level, person-centred language can mean describing behaviours as precisely as possible rather than labelling a person as “aggressive” or “difficult” or using stigmatizing language such as “burden” or “victim.”  

 New language in action 

The intent with all this rewording is that, as we collectively change the language around dementia care, a person-centred approach will emerge intuitively. The leadership at MedicAlert actively consults with medical professionals and dementia advocacy groups to ensure staff employ the most current language when addressing subscribers or care partners over the phone. Staff are trained to approach each subscriber’s individual needs and healthcare concerns rather than being limited by assumptions about what it means to have a dementia diagnosis.  

 “We're not boxing them into a condition. It’s all about the person,” Tan explains. “Everyone has a unique set of circumstances that they deal with. Our job is to try and collect the information so that in the event of an emergency, we’re able to distill and relay those unique sets of information to first responders to get the person home safely.” 

 The empowerment of words 

In addition to using updated language to reflect current best practices in dementia care better, MedicAlert ensures subscribers with dementia are comfortable with the language used to describe their health concerns, even if it means using words that don’t match their official diagnoses. For example, if a subscriber is not yet comfortable identifying as a person living with dementia and would prefer to say they experience a degree of “memory loss,” those distinctions can be made on medical profiles. Each person has different needs, and treating them as individuals rather than a diagnosis can greatly contribute to quality of life.  

 “Those old labels depersonalize people and take the individual out of the equation,” Wagg says. “They become their diagnosis.”