PART 6: Encouraging the use of positive language
by Richard Kilborn
The penultimate question in our survey put respondents in the hypothetical situation of having to provide recommendations and advice concerning the use of positive language. Respondents were asked to imagine they were preparing a guide to encourage the use of positive language when talking about people with memory or hearing loss. They were asked to give their top three recommendations, in each case indicating whether the advice related to memory or hearing.
The responses we got to this question in many ways fell in line with views that people had expressed throughout the survey. Whether talking about a person with memory loss or hearing loss, our respondents were clear that absolute priority should be given to treating the other person with dignity and respect:
“Please understand that the person is still the same person, whether they have memory or hearing loss.”
“You need to talk about the disability, not the person.”
People were especially conscious of how important it would be to understand the feelings of someone with memory loss whose cognitive capacity was no longer what it once was:
“Remember that they [persons with memory loss] are a real person who may not realise that the way they act or think is contrary to what they in the past and they do not realise that they are acting or speaking differently.”
The other recommendation that featured prominently was the need to accentuate the positive. Respondents came up with various ways of expressing this:
- “Focus on what they can do rather than what they can’t.”
- “Pay attention to the part of their life that still functions well.”
- “Encourage what they can do.”
- “Think about solutions as well as problems.”
One or two respondents also recognised that the very attempt to be positive, forward-looking and affirmative might prove in some cases to be counterproductive. It might gloss over a person’s real sense of loss, so some respondents were keen to sound a note of caution:
“[The use of] positive language may be seen to dismiss or minimise the problem and could even deter some people from seeking help.”
“Be positive, but don’t be cheesy. This applies to both memory loss and to hearing loss. No-one wants over-inspirational phrases when dealing with a health condition.”
The need for honest and straight dealing
When asked to comment further on how one might the use of positive language, several people stressed the need for honest and straight dealing:
“Be honest and use real terms such as ‘deaf’ and ‘dementia’. Call things what they are.”
“Don’t pretend the loss isn’t’ there or downplay it. Bet straight with people.”
Being honest and respectful with people with hearing or memory loss also includes a willingness to provide the kind of practical help and support that can be invaluable to someone whose confidence might be compromised. Simply telling a person that help is out there can in itself be reassuring. Likewise, asking them in what particular way one can help them can be beneficial in reminding the person that they still have agency:
“Ask a deaf or hard of hearing person what you can do to help them hear better.”
Minding one’s own language
Another recommendation that was made, in one form or other, by several of our respondents was the need to be careful in one’s choice of language when referring to the respective conditions:
- “Keep it natural. People use different language when talking than when writing.”
- “Use the correct terms e.g. hearing loss and memory loss”
- “[With hearing loss] use person-centric language i.e. ask how they would like to be referred to”.
As well as paying attention to the kind of language one should employ in these situations, respondents were also alert to what one should attempt to avoid. Words and phrases that implicitly or explicitly minimised or trivialised the respective conditions should be rejected. And by the same token, one should be aware of the potential hazards involved in the use of humour in the attempt to lighten the tone of such conversation:
“NEVER joke about someone being unable to hear or remember.”
“Remember that the person is struggling with the loss and do not belittle them.”
All in all, people’s recommendations to encourage the use of positive language reflected a high level of empathy with those seeking to come to terms with these conditions. One of the key recommendations was to use language that prioritises the condition but does not contain any suggestion that the person is defied by the condition. As one respondent succinctly noted:
“Think of it as a medical condition, rather than a disability.”
Reasons for being cautiously optimistic
What was gratifying about the response we got from those who participated in our survey was that it showed how willing people were to give serious thought to some of the issues raised. As one respondent commented at the end of the survey:
“There needs to be more discussion about both of these conditions [hearing loss and memory loss], so there is less perceived stigma attached to both.”
What was also encouraging to learn was that several respondents had taken the opportunity to reflect on the implications of these issues for wider society, especially on how the challenges of living with hearing and memory loss were being addressed. One person, for instance, stressed the need for much greater attention being paid to “looking after memory health”. The same person was sceptical, however, about whether healthcare professionals were doing enough to help people to manage these conditions:
“Management of these conditions is really important. GPs tend to go for the easiest diagnosis, particularly if you are of a certain age. they will dismiss your concerns if you are deemed too young”.
The members of the team recognised from the outset that a survey of this type would have its limitations, especially as it was conducted at the height of the Covid pandemic. Ideally, we would have liked to follow up on some of the points raised by respondents to the survey by doing some additional interviewing, but in the event, we were only able to do this to a limited extent. What we would have liked to discover more about, for instance, was what impact it had on partners and close family members as communication with a loved one became more difficult as a result of hearing or memory loss worsening. Interviews with a spouse or a partner could have helped reveal some of the communicative challenges faced when life priorities had to be re-examined. For example, questions we might have raised in such interviews would include:
- How does one prepare oneself for a difficult and challenging conversation when it first becomes apparent that a loved one has problems?
- How does one go about equipping oneself with the necessary information about the condition?
- And perhaps most significant of all: Does it get any easier over time talking about the condition affecting one’s partner?
- People might think that a person sooner or later becomes reconciled to living with the condition and will possibly be more prepared to open up to others about it. But is this what actually happens in a real-life situation?
The one question that we would have been eager to put to interviewees was whether the spouse or partner had spotted any significant changes in the loved one’s readiness or ability to talk. about their condition pre-and post-diagnosis. At the point of diagnosis, a person is having to accept that they are now living with what is a potentially life-changing condition. This recognition understandably imposes a considerable emotional and psychological burden. Words and phrases that were once used to describe the. symptoms and complaints of others are now being firmly attached to oneself. There will therefore, in all probability, be a period when someone with a diagnosis of dementia or hearing loss is arguably having to learn a new language, one that allows them to talk with some authority about their condition. This might also be likened to signing up as a new member of an association or club and, in the process, becoming familiar with the ways of speaking and conducting oneself that are acceptable to members of that group.
Encouraging partners and spouses to talk about the experiences that possibly span a considerable period of time would be one way of discovering more about the challenges involved in adapting to a new life situation. Another strategy – and one that might become part of some future project – would be to set up some form of collaboration with health education authorities and other support groups to ensure that all materials designed to raise awareness about hearing and memory loss are couched in accessible and inclusive language. It became clear from our survey, for instance, that individuals and families have sometimes faced an uphill struggle trying to make sense information leaflets that make excessive use of specialised medical vocabulary. For many this proved to be a very challenging experience, especially coming at a time when people’s general level of confidence was already at a low ebb. It would thus be highly desirable to make certain that all informational materials produced in future are genuinely user-friendly.
The other issue that might be explored in a future project relates to the role played by those participating as a ‘concerned other’ in any communicative exchange on the subject of hearing or memory loss. We have already commented on how people living with memory or hearing loss often feel a much greater degree of apprehension than may formerly have been the case. These feelings of uncertainty may, in turn, have a marked impact on their communicative ability and their readiness to express in words what they are concerned about. All the more reason, therefore, in any communicative exchange, to do one’s utmost to be an attentive and respectful listener. What one needs to bear in mind is that the other person involved in the conversation, is always playing a vital part in facilitating the exchange by responding empathically to non-verbal signals given by the other person. Frequently – and maybe especially in the case of conversing with someone with memory loss – this may involve waiting patiently until a response is forthcoming. It also means resisting any temptation to jump in and pre-empt what you think the other person is about to say.
Lessons learned
The small team involved in carrying out the survey fully recognised that there is much more that remains to be done in raising awareness about many of these issues. Among many other things, the survey taught us that finding the right language to talk about these matters is by no means the sole concern of those who are having to come to terms with living with these conditions. It is also something that should feature more prominently in educational programmes in our schools that seeking to foster more caring and understanding attitudes towards those in our society who are confronting particular challenges. The creation of a genuinely inclusive environment is within our grasp, provided that sufficient number of people are committed to achieving this goal.
Action point
Sensitivity to language lies at the heart of what the current project has been all about. Finding the right words to talk about one’s own condition is difficult enough. Being careful about one’s choice of words when talking to or talking about someone with hearing loss or dementia is equally important. One always needs to tell it as it is!
People should therefore be encouraged to talk more openly about their fears and apprehensions concerning these conditions. At the same time, however, there needs to be a concerted effort to raise awareness on the part of the general population about what it means for an individual if they suddenly find themselves facing a potentially life-changing situation.