PART 4: Obstacles to overcome
by Richard Kilborn
Most of us are already familiar with the difficulties of talking about certain topics with a loved one. Indeed, some people find they are able to talk more freely about intimate aspects of their lives with a total stranger than with someone from their close family circle. It is also generally accepted that, when we do pluck up the courage to share something with a friend or family member, we will often do a certain amount of self-censoring. We persuade ourselves that – maybe out of deference to the other person, – we will choose not to mention certain issues. Sometimes, this might simply indicate a lack of courage on our part in not wanting to face up to uncomfortable truths. Sometimes the self-censoring will be out of respect for how the other person might react to what we have to say.
What holds people back from engaging in this sort of conversation?
Given the particular difficulties that are acknowledged to be involved in talking with someone about hearing or memory loss, we were also interested to learn more about the specific reasons as to why a person might hold back from starting such a conversation. We therefore introduced into our survey a question that offered respondents various possible reasons for holding back. In this connection we invited them to select the two reasons most likely to prevent them from saying they were concerned about the other person’s hearing or memory. The reasons we offered ranged from “Not finding the right moment” and “The fear of a negative reaction” to “Not wanting to cause offence” or “Not knowing what to say”. Being given a range of options had the predictable result that most of our respondents simply went along with the suggested reasons and indicated that these were the ones that were mostly likely to hold them back. There was also widespread acknowledgement that it would be difficult to find the right time for such a conversation. And many agreed that – even if they did pluck up the courage to say something – they would fear getting a negative response. The only case in which people were disinclined to accept one of the reasons given was when we suggested that the reason why they might not initiate a conversation with someone with hearing loss was “because they did not know what to say”. Less than a third of our respondents agreed with this proposition – once again underlining our general finding that people had fewer misgivings about talking about loss of hearing than loss of memory.
On looking through some of respondents’ additional comments, it soon became clear that it was not so much that people were ‘lost for words’ when verbally interacting with someone who appeared to be struggling with their memory. It was more that they had decided beforehand that there were certain things that were better left unsaid Evidence of this is also proved by the survey finding that showed that a significant number of people admitted they would not broach the issue of memory loss for fear of causing offence
Preferred terms and words or phrases considered off-limits
One the main aims of our survey was to get a better idea of how memory and hearing loss are talked about and to discover what impact the use of certain words and phrases has on those who are either concerned they might be affected by these conditions or have already received a diagnosis. To these ends, we devoted part of the survey to checking on how people react to terms that are frequently used in general parlance to describe the respective conditions. We also them to differentiate between terms they themselves had used and terms they actively disliked.
Predictably enough, when it came to an assessment of the way in which memory loss is talked about, people generally favoured straightforward, neutral descriptors such as ‘memory loss’ or ‘forgetful’. And more than 80% of respondents were content with the use of the term ‘poor memory’ although there was active dislike of the term ‘dodgy memory’. Likewise, there was almost total disdain for phrases such as ‘Away with the fairies’ and similar hostility to the use of terms such as ‘Muddled thinking’.
It was gratifying to see the extent to which many of our respondents were sensitively attuned to the associations and connotations that words can have for those most directly affected by these conditions. Indeed, one or two people reminded us that ‘muddled thinking’ is certainly not the sole preserve of those who have memory problems! One person had some very perceptive comments to make regarding the need to make a careful distinction between terms used to describe difficulties in cognitive processing and terms that relate more specifically to dementia and memory loss:
“I wouldn’t use ‘muddled thinking’, ‘easily confused’ or ‘wandering mind’ to talk about memory issues. I would use them more [in relation to] the ability to process thoughts and I would use ‘wandering mind’ to describe being easily distracted. To me, memory and processing ability are different things, though people with dementia may experience difficulties with both.”
When people were asked to comment on words and phrases commonly used to describe hearing issues, there was a similar pattern of response as with memory loss. Words that belittle or trivialise were derided, whilst language that respectfully and objectively describe the experiences of those with hearing loss were commended. Just as with memory loss, respondents display a high level of sensitivity to the ways in which the various types of hearing loss or impairment are talked about. Carefully directed questions which gave the person addressed the opportunity to describe the type or severity of their hearing deficiency were considered as vastly superior to those that cast the person as ‘victim’ or ‘sufferer’. The simple but effective question: “How severe is your hearing loss” was thought to be an excellent way of getting a conversation off on the right foot.
Just as with memory loss, terms that clearly and objectively spelled out the nature of the hearing problem were generally preferred. Thus, terms such as ‘hearing loss’, ‘hearing impairment’, ‘hard of hearing’, ‘hearing difficulties’ and ‘deaf’ were considered much more appropriate language to use than terms that had more judgemental or negative overtones such as ‘dodgy hearing’ or ‘cloth ears’. One should perhaps remember in this respect that certain terms that might well have been used with some frequency by earlier generations are nowadays very properly considered to be beyond the pale. Evidence of this is provided by one of our respondents who had the following comment to make:
“Deaf as a post – I personally don’t like this term, but I happen to know that it was commonly used by my parents’ generation.”
One or two of our respondents who had been diagnosed with hearing loss or dementia spoke in complimentary terms about the help they had received from various support organisations. One person with hearing loss told us how grateful they had been to receive advice from the organisation Hearing Link. Not only had it helped them to describe the nature and severity of their hearing loss; it had also given them a series of useful hints as to the kind of questions they should ask when interacting with audiologists and other healthcare professionals.
We need to improve communication between those who are affected by hearing and memory loss and the various organisations geared up to provide help and support. Existing channels of communication should be reviewed with a view to making the information provided more user-friendly. The next blog will focus on some of the suggestions and recommendations that our respondents made regarding how to open up discussion about hearing loss and dementia, including some thoughts on how certain communicative challenges might be addressed.
Part 5 and 6 (final articles) of this blog series will be published on Friday 10th September.