alzheimer society nails language guidelines

The Second Edition of the 20-volume Oxford English Dictionary (OED) contains full entries for 171,476 words in current use, as well as “around 9,500 derivative words included as subentries.” 

But language evolves. The third edition of the OED is a work in progress; it’s updated quarterly.  More than 1,100 new words, senses, and subentries were added in its January 2018 update. About the same number were added in September 2017. Examples of new words, senses and subentries abound. As recently as 15 years ago, for example, the word “text” was a noun only; now it’s also a verb.

Similarly, the noun “sext” was previously defined as “A service forming part of the Divine Office of the Western Christian Church, traditionally said (or chanted) at the sixth hour of the day (i.e. noon).” These days, it may also be “A sexually explicit photograph or message sent via mobile phone.” I wonder if that’s progress or regress? “Sexting”—that is the act of sending such a message—is now a verb as well.

Meanwhile, 47,156 other words have become obsolete. I was unable to find examples; perhaps they have been deleted as well as obsolete-ed.

More important than their sheer number is the way words influence how we live. How we describe our own and others’ experiences of life changes as our understanding and perceptions of the world shift. Words play a huge role in that. Consider these examples:

• Rape “victims” have become rape “survivors.”
• The terms “African-Americans” and “Black Americans” have replaced racist slurs.
• “Climate change” more accurately depicts what underlies our unpredictable weather conditions than does “global warming.”
• Today’s youth may not know that cancer was called “the big C,” and was mostly spoken about in whispers, if at all, before they were born.

It’s hardly surprising that the words we use to describe Alzheimer’s disease and related dementias (ADRD), and the experiences associated with them are also changing, and will no doubt continue to change as our understanding of ADRD broadens and deepens.

I feel strongly that the words we use and the labels we attach to people who live with dementia (PLWD) define how we perceive and treat PLWD. Words shape the way we think. The way we think determines the ways we act. The ways we act impact our lives and the lives of those around us.

The words we use, and the ways we use them are important.

That’s why I was delighted when the Alzheimer Society of Canada released new person-centred language guidelines in November 2017—guidelines which, for the most part, hit the nail on the head. The Society frames the need for change like this:

“Language used to describe dementia has historically been largely negative, focusing on the losses experienced by the person living with dementia. While these losses are real, this negativity has contributed to the development and persistence of stereotypes and approaches to care that focus on weakness rather than strength, illness rather than wellness and victims rather than whole persons. This approach influences how others view dementia, and can add to the stigma and discrimination experienced by people living with dementia and their caregivers.”

I was particularly pleased to see lots of references to the wording and suggested language around the perfectly reasonable reactions and normal behaviour of people who live with dementia to sets of circumstances that would cause anyone to respond in similar ways. Take, for example, this screen shot from the Alzheimer Society’s language guidelines PDF, which may be downloaded here:

I’m over the moon that the Alzheimer Society of Canada rejects the label “wandering,” and suggests alternatives like these.

I’m ecstatic that the Alzheimer Society of Canada says labels such as “acting out,” “aggressive behaviour,” “agitation,” “challenging behaviour,” “difficult/problem behaviours,” “hoarder/hoarding,” “violent,” “screamer,” “sundowning/sundowner,” and the like, suggest that “the behaviour is a result of a problem with the person,” and “do not support a person centred response.”  The publication of these language guidelines by the Alzheimer Society of Canada is a massive step in the right direction. It validates and vindicates what I and others have been saying for years about so-called BPSD and antipsychotic medication.

Thanks Alzheimer Society of Canada, for hitting the dementia language nail on the head.

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Take my short survey on behaviour here.

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