Proponents of transforming elder care focus on the words we use, and often suggest new language choices for much of our terminology. This is not merely a matter of semantics, or some empty interpretation of political correctness. There are real consequences to these language choices—they affect how we see those around us and also affect the ways in which we care for and respond to them.
Advocates for better approaches to people living with dementia are no exception here. Many such language guidelines have been put forth in recent years. Examples include Alzheimer’s Disease International and the US Dementia Action Alliance.
A perfect example is the outmoded term “behavior problem.” When this is used to describe someone, it contains a very strong connotation that the person is the source of the problem, thus ignoring a host of unmet needs and environmental and relational factors that would make any of us distressed. Therefore, this term makes us see the person in a negative light, and also prevents our critical thinking around the many causes of distress that are more about how we are supporting the person than the about person herself.
So “words make worlds,” as Eden Alternative advocates say, and the wrong words are as much an impediment to high-quality care as a restraint or an inappropriate drug. But it’s not enough to train our professional care partners in this regard.
Government inspectors visit nursing homes and many other elder communities regularly to determine the quality of care. Likewise, there is a new trend to create consultants to come to the communities and advise the teams about how to respond to challenging situations. Examples include BSO (Behavioural Supports Ontario) in Canada, and the DBMAS (Dementia Behaviour Management Advisory Service) in Australia.
[Of course, since we are talking about language, I could comment on the names of these consultants. If I came up to you and said I was here to “manage your behaviour,” would you think I cared about you? And would you think I was acting in your best interest, or someone else’s??]
But assuming that I don’t have the power to change titles of government agencies half a world away, let’s get back to specific language choices around dementia. Concerns have been raised with me from several countries that in spite of an organization’s hard work to improve their view of the person, inspectors or consultants often come into their community using outdated and stigmatizing language. This threatens to undo the attitudinal shift that their care partners have navigated, and to negatively impact those they serve.
In my talks on culture change, I always stress, “Culture change is for everyone.” That means that those who support and regulate long-term living environments also need to evolve, so as not to do more harm than good. I have heard instances where such regulators feel that we need to conform to their language. Bollocks! If you do not learn the most up-to-date concepts around enlightened care, you become part of the problem. And it starts with language.
Here is what I recommend to communities that have experienced these struggles: Make a glossary of terminology. List all of your new word choices, along with the old ones they have replaced, and the reason why your wording is preferred. Make several copies, laminate them, spread them around the community, and hand a copy to those who come in to inspect or consult. Politely but firmly ask that when they speak to the people who work and live in your community, they conform to your language and use the glossary as their guide, so as not to undo your progress.
Words matter. If we want what’s best for those we serve, we all must watch our language!