PART 3: Talking about sensitive issues
by Richard Kilborn
One of the aims of our project was to discover more about how people might broach the topic of a loved one’s failing memory or compromised hearing. Given the sensitivity of some of the issues involved, we decided that it would be best to adopt a two-step approach. We would first pose the hypothetical question about how a person would be likely to act if they noticed a marked deterioration in a loved one’s hearing or memory. We would then follow this up by asking what specific strategies or approaches they might adopt when confronted a partner’s hearing or memory loss. It is often a partner who will take the initiative in raising a topic that the other might be disinclined to address.
Once again, there were some interesting variations in people’s views on how they imagined they would act in the case of a partner’s hearing loss as opposed to memory loss. In the case of the former, more than 80% of respondents stated that it was likely they would have no problems in raising the issue. This readiness to take swift action by opening up discussion might be partly explained by people’s awareness that there are a range of services on which one can call to gain help and support. When invited to give specific suggestions as to how one might persuade a loved one to ‘open up’ about their concerns, our respondents had a whole series of helpful recommendations. Many people were eager to stress that a lot would depend on the nature of one’s relationship with that other person, how well one knew them and to what extent one might be able to anticipate their likely response. Many also emphasised the importance of showing maximum empathy and of choosing the right moment to voice one’s concerns. As one person put it:
“I would find a private moment and say: “I think I’ve noticed you’re having difficulty hearing – and I know how that feels. Would you like to talk about it? I’d be happy to share my experience, if that. would be helpful.”
Another respondent went to considerable lengths in imaginatively constructing a detailed scenario in which such a ‘difficult’ conversation about hearing loss might take place:
“I would ask how their day has been, go in like a normal conversation and initiate a conversation about a previous time in their life when they had significantly better hearing and ask how they felt then. Then bring up a recent time when their hearing has affected their experience and ask how they felt about it. Then I would ask them if they felt like there had been a significant change for them. This would be my method if they were in denial. I would raise this when their behaviour started to impact my life in my normal interactions with them. I would bring up the topic when they were in a good mood, in a relaxing environment.”
The special challenge of talking about memory loss
One of the most interesting differences in responses relating to preferred strategies for raising difficult issues was that many more people chose to make additional comments about memory loss. This would seem to reflect the high level of anxiety that is felt about medical conditions affecting memory. Respondents were especially sensitive and empathic when considering appropriate ways of acting if they detected signs of failing memory in a loved one. Their suggestions for appropriate strategies for helping a loved one in these situations showed a good level of insight and understanding, as in displayed in the following comment:
“I would probably keep an eye on it [ the loved one’s worsening memory] for a short time. If the change was not dramatic, I would try to help the person with strategies for remembering things day to day. If it was a sudden or dramatic change, I would say something sooner. Memory issues can be a serious sign of more than one thing.”
Some of our respondents had already had experience of having to address the issue of memory loss as a result of having a family member diagnosed with the condition. This was the case with the following person’s father
“My father had Alzheimer’s, diagnosed quite early because as a family we noticed an issue and encouraged him to see the GP for a memory test. I know it can be tricky to raise it but because some type of treatments can help to slow the decline it’s better to act earlier than later. I tell people this and explain how an early diagnosis really helped my Dad. Waiting till it’s too late won’t make the problem go away but might mean it is too late to treat. Worsening memory can be a symptom of other conditions e.g. Parkinson’s that benefit from treatment and support. I’m not the kind of person to stick my head in the sand about such things”.
What was especially striking about the comments in relation to recommended strategies for talking about failing memory was the sheer diversity or what was suggested. Almost everybody who chose to comment, however, stressed the need to match the proposed strategy to the character and temperament of the person affected. Several respondents emphasised the importance of choosing the right time and setting for such a conversation and people with experience of talking to those with hearing loss mentioned that it would be vital to hold the conversation an optimal acoustic environment. Other respondents also stressed that – however one went about broaching the subject, one should show maximum respect for the individual:
“I would only raise it with close family, and it would be at a time when we were unlikely to have interruptions.”
“I would make a general comment about memory loss, maybe keeping it in relation to myself. [I would try] to open some form of discussion and lead into it that way. Again, I would only raise this in a private quiet place and when we were on our own.”
Mindful of the need to be empathetic, one or two respondents commented on the advantages of adopting a gently-gently approach and of cueing in to all the signals – both verbal and non-verbal – that the other person was giving you:
“If the person is aware of the problem and body language shows they are anxious I would first ask, if they were ok and ask if they wanted to mention it to their doctor. If they didn’t appear to be aware, the next time an example of memory difficulty occurred, I would gently say [that] this has happened a few times now or ‘I’m worried you’re forgetting things’.”
All these suggested strategies are commendable, and they all fall in line with the advice given by the Alzheimer’s Society. The golden rule is to avoid any suggestion that it is some ‘affliction’ that one is confronting and to ensure that one uses positive language. As the Alzheimer’s Society guide puts it: “Always use language that dementia is not the defining aspect of a person’s life. See the person, not the dementia”. The same guide goes on to give the following advice about the need to use positive language when talking about dementia:
“The way we talk about dementia has a direct effect on how people living with the condition feel. It can also have a profound effect on society. After all, the words we use affect the way we think, and the way we think affects how we behave. For those living with dementia, using words or phrases that label, belittle or depersonalise people can have a big impact on them and their family. It changes the way they feel about themselves, shaping their mood, self-esteem, and feelings of happiness of depression. It can also change the way other people think about dementia, and increase the likelihood of a person with dementia experiencing stigma or discrimination”Alzheimer’s Society Guide
The advice given above is designed to make all of us more aware of the need to choose the right words in what are very sensitive situations. The crucial point to bear in mind is that the person who you are speaking about should be recognised as someone deserving of the highest respect. One of the ways of showing respect is by putting oneself in the shoes of the person with memory loss. Much of this advice is reflected in responses given by our survey respondents. A strategy that several of them recommend when starting a conversation on ‘memory issues’ is to first make reference to one’s own memory before then inquiring whether the other person faces similar challenges:
“I’m finding that I can’t remember so much with age. How about you?”
“I’d say I felt that my own memory was not as good as it used to be and maybe the same applied to hers”.
“It’s more difficult to remember things when you get older, isn’t it? Nowadays, I seem to have a lot of senior moments and I suspect the same is true for you too. Have you thought of getting yourself tested?”
As well as the need to demonstrate empathy with the person with memory loss, several of our respondents stressed the importance of carefully planning the occasion when any conversation about memory loss would take place:
“It would very much depend on the circumstances and the person involved. It would need a lot of thought beforehand.”
One or two people favoured a more indirect approach when raising concern about a family member’s worsening memory. This approach would involve first talking matters over with friends and family of the person affected. One person went into considerable detail as to how they would proceed:
“I would not raise concern with the individual but would rather raise it with friends and family. There could be a discussion on how to most effectively interact with the individual with worsening memory loss. I would bring up the topic when the other person is calm but not necessarily when everyone is in a group together”.
There would appear to be a lack of clarity about identifying the early signs of memory loss. Given the special challenges posed by talking about memory loss, a greater effort should be made to provide adequate information to the public on how to identify these signs and on how and where to seek advice. In the next blog we will be considering what kind of obstacles people might have to overcome before raising the subject of hearing loss or memory loss with a loved on.