WORDS MATTER

Living with Alzheimer’s and related dementias ought to be a lot easier today than just a few years ago; after all, much effort is on raising awareness that people with dementia are not sick or ill as such. Yet in spite of our earnest efforts, as a culture we’re still held back by our language. There’s an automatic conflict when we push for “aging-in-place” and “dementia friendly communities” while still referring to people living with dementia as patients, victims, sufferers, and demented; we talk about the longest day, the long goodbye, war on and fighting against Alzheimer’s.

Even using the term Alzheimer’s disease. One geriatrician compares Alzheimer’s disease to Down syndrome, challenging us to imagine how differently we would consider folks if they were living with Down disease. Thanks to a change in attitude and language we’ve come to accept people of varying abilities, both physically and intellectually. But as a culture we still have a hard time accepting that people living with Alzheimer’s syndrome can have rich and purposeful lives for many years. We need to shift our mindset away from this population being “sick” as in “disease”   

Other terms or words that we routinely still use further reinforce the idea of illness and helplessness: empty shell, disappeared, afflicted, subject, or ward; not all there, no longer there, dotty, wanderer, screamer, or sundowner.

APPROPRIATE TERMS,
With and about people living with dementia, including Alzheimer’s

Let’s change our terminology:
“Patient” is only acceptable in medical settings, i.e. Doctorsʼ offices – otherwise a person is a resident, client, friend, family member etc.
“Diapers” are for babies. Adults use briefs or underwear.
“Bib” is also for babies or lobster restaurants; otherwise it can be a napkin or neck napkin. If youʼd be offended, itʼs not okay for anyone else

INAPPROPRIATE TERMS at any time:

The majority of these terms reflect how we tend to view dementia, including Alzheimer’s from the point of view of the cognitively abled, rather than attempting to look at the world from that person’s point of view. We may see someone as being aggressive, when he’s frustrated at not being able to convey his wishes. Aggression, agitation, and anger are “expressive behaviors” when people cannot make themselves understood through language. One example is“wandering” . When a person with dementia goes out the door alone, we tend to panic because he has “wandered” off – in his mind he may be exploring, “going home”, or even simply enjoying the fresh air.

The easiest way to gauge the appropriate terms to use is to put ourselves in his shoes, think of the situation from his point of view, and remember that he’s unable to express his feelings about the pain and alienation he may feel when subjected to these derogatory expressions.

Making the point: https://www.youtube.com/watch?v=Wgi0t2ap-us

 Submitted by Dr. Jytte Fogh Lokvig, Alzheimer’s Specialist.