When It Is Okay Not to Know
Reflecting on Dr Emma Ferguson-Coleman’s session about communication with Deaf people living with dementia
Content note: This article discusses dementia, changes in communication and the emotional effect on individuals, families and professionals.
An interpreter is sitting with a Deaf person who has dementia. The person begins to sign, but the information does not form a clear account. The signs may refer to different periods of their life, use unfamiliar vocabulary or move between ideas that the interpreter cannot confidently connect.
The professional in the room is waiting for an interpretation. The interpreter feels pressure to produce a complete and orderly message, but doing so would require them to fill in gaps and impose meaning that may not be there.
What should the interpreter say?
During her Day Two keynote at The Together Conference 2026, Dr Emma Ferguson-Coleman offered a response that may feel uncomfortable within a profession where people often expect interpreters to understand quickly and present information clearly.
Sometimes it is appropriate to say:
“I am not completely sure what they have signed. This is what I have understood, and this is where the meaning became unclear.”
Emma’s session, What Did They Say? When It’s Okay Not to Know: Managing Communication with Deaf People with Dementia and Their Families, explored what dementia can mean for Deaf people, their relatives, carers and the interpreters working alongside them.
Her message was not that accuracy becomes less important. It was that accuracy sometimes requires us to represent uncertainty rather than hiding it.
Dementia affects much more than memory
Dementia is often described mainly through memory loss. Emma explained that memory can be affected significantly, particularly short-term memory, but the condition can also change language, personality, perception, emotional responses, decision-making and a person’s understanding of time and space.
A person may remember events from childhood but be unable to recall something that happened earlier that morning. They may ask for a drink shortly after having one and become upset when a family member insists that they should remember.
From the family member’s perspective, it may feel as though the person is being argumentative or difficult. From the perspective of the person living with dementia, they may genuinely have no memory of the earlier event.
Emma gave the example of a father who asked for another coffee. His son reminded him that he had already had one, and the disagreement began to escalate. Emma encouraged a different response. Whether the earlier coffee had happened was less important than recognising that the father wanted one in that moment.
Dementia may also affect how someone recognises familiar objects and understands their purpose. A person may see a cup and a jug but no longer connect those objects with the action of pouring and drinking. They may become dehydrated, not because they have deliberately refused a drink, but because the familiar sequence of actions no longer makes sense to them.
Understanding these changes can help interpreters avoid treating every unusual response as a linguistic problem or a refusal to engage.
When the person’s sense of time is different from ours
Dementia can affect where a person understands themselves to be in their own life.
Emma described meeting an 86-year-old Deaf woman on her birthday. When the woman saw a recent photograph of herself, she asked who the old woman in the picture was. She believed that she was 36 and described herself as having dark brown hair without any grey.
The photograph did not match the person she understood herself to be.
In another example, someone spoke about having six children when they actually had two. The six people they were referring to were their brothers and sisters. Their communication was not random. They had moved to an earlier period of life and were describing the family that made sense within that time.
An interpreter may initially believe that the information is incorrect. However, Emma encouraged participants to consider where the person may be positioning themselves in time.
This does not mean pretending that every statement is factually accurate. It means understanding that challenging the person repeatedly may create fear, frustration or distress without improving communication.
The interpreter may need to convey both the information and the apparent shift in time so that the professional can understand how the person is currently experiencing the interaction.
Older signs and changing language
Language can also change as dementia develops.
A Deaf person may return to signs used earlier in their life, including regional or generational vocabulary that a younger interpreter has never seen. Someone who has used BSL throughout adulthood may begin relying more on the communication methods used during childhood.
Emma gave an example involving an older sign for television. The sign represented turning a dial on the front of an older television set. An interpreter who had only known televisions with remote controls might not immediately recognise the reference.
The person’s language is not necessarily wrong. It may come from a different period.
This creates a particular challenge for interpreters who have been trained to recognise current language use but have had limited contact with older Deaf people or the signs used by earlier generations.
Emma also explained that some people with dementia return to their first or earlier language. A hearing person who learned English later in life may begin speaking more frequently in their original language. A Deaf person who experienced oral education before later using BSL may return to speech, lipreading or a more English-influenced form of signing.
The most appropriate communication approach may therefore change over time. An interpreter may need to use more visual demonstration, simplify the structure, adapt their sign choices or work alongside a Deaf relay interpreter who has greater knowledge of older or regional language.
The person may no longer understand that they do not understand
One of the most difficult changes Emma discussed was the loss of a person’s ability to recognise or explain that they have not understood.
In many interpreted interactions, we expect the Deaf participant to ask a question, show confusion or tell us that the information is unclear. A person living with dementia may no longer be able to do that.
They may watch the interpreter without connecting the different parts of the message. They may receive isolated pieces of information but be unable to form an overall understanding.
Asking, “Do you understand?” may not provide a reliable answer. The person may say yes because they want to agree, because the question itself is unclear or because they no longer recognise what understanding would involve.
The interpreter and professional may therefore need to notice other signs. Is the person visually engaged? Can they respond to a clear, focused question? Can they show what they have understood in another way? Has the information been presented in smaller sections?
Emma compared the experience to looking through frosted glass. Pieces of the message may still be visible, but the connections between them have become less clear.
This is one reason why long explanations and complex questions may be particularly difficult. The issue may not be the quality of the BSL interpretation. The person’s brain may no longer be able to connect and retain all the information being presented.
Communication may need to become more physical and immediate
Emma encouraged interpreters to consider demonstration and embodiment rather than relying entirely on abstract signed explanation.
For example, someone attending physiotherapy may be asked to stand up, lift an arm or copy an exercise. The sign for the movement may no longer connect with the function of the person’s own body.
The interpreter may need to stand up and demonstrate the action rather than producing a longer linguistic explanation. The physiotherapist may also need to show the movement directly and give the person time to copy it.
This connects with the wider discussion of translanguaging from Dr Russell Aldersson’s conference session. Meaning may be supported through language, objects, physical demonstration, pictures, gesture and the environment around the participants.
However, an object is only useful when the person still understands its function.
Showing someone a cup may not help if they no longer connect it with drinking. The interpreter and professional need to observe what the person responds to rather than assuming that one communication method will work consistently.
What works on one day may not work on another. Dementia can fluctuate, and a person may have periods of greater or reduced understanding.
Rapport may matter more than being remembered
Interpreters may meet the same Deaf person several times and expect that repeated contact will support communication.
However, the person may not remember the interpreter from one appointment to the next.
Emma advised against placing pressure on them by saying, “Don’t you remember me? I was here last week.”
Remembering the interpreter’s name or face is not the most important part of the relationship. What matters is whether the person feels safe and comfortable with the interpreter in that moment.
The interpreter can introduce themselves again, explain their role simply and allow the relationship to begin from where the person is that day.
Emma asked participants to consider what they were trying to achieve. Was the priority to understand every sign perfectly, or to build enough trust and connection for the person to take part?
This is not necessarily an either-or choice, but there may be moments when rapport needs to come first. A person who is anxious, confused or frightened may not engage with an unfamiliar interpreter simply because the interpreter has been professionally booked.
A short conversation about a familiar subject, a photograph or something present in the room may help establish a connection before difficult questions begin.
“They don’t know me”
One of the most powerful examples from Emma’s presentation involved a Deaf woman and her daughter.
The daughter was discussing the possibility of her mother moving into a care home. She explained that she needed a break from caring and repeatedly tried to involve her mother in the conversation.
The mother sat with her arms crossed and did not appear to engage. The discussion continued around her until she eventually responded:
“They don’t know me.”
The statement captured several concerns at once. The care home staff did not know her personally, did not know sign language and did not understand her Deaf experience or communication.
Her response also showed that even where other areas of language or memory were changing, her identity and ability to express a strong view were still present.
Emma’s example reminded participants not to assume that someone has nothing to contribute because they appear withdrawn or do not respond in the expected way. The person may need more time, a different approach or an opportunity to address someone directly rather than being spoken about by family members and professionals.
The phrase “they don’t know me” also raises questions for services. Knowing that someone is Deaf is not the same as understanding their language, history, identity, routines and relationships.
A care placement may be technically available but still leave the person isolated if staff cannot communicate with them.
Families are part of the interaction
Family members and carers may hold valuable knowledge. They may recognise older signs, understand the person’s routines and know which subjects or approaches support engagement.
Interpreters should be willing to work collaboratively with them.
However, family members may also be tired, grieving and under considerable pressure. They may speak for the person, correct them repeatedly or ask the interpreter not to convey particular information.
Emma encouraged interpreters to be gently assertive. If a family member says, “Don’t tell them that,” the interpreter cannot simply remove information without considering their professional responsibilities and the Deaf person’s right to participate.
Families may also become focused on what the person can no longer do. The interpreter can help keep the Deaf person visible within the conversation without moving into the role of advocate or decision-maker.
This may involve asking the professional to slow down, pointing out that the person is not visually attending, or explaining that a question needs to be presented differently.
The aim is not to enter into conflict with the family. It is to work with everyone while keeping the Deaf person at the centre of the interaction.
Do not tidy away the uncertainty
Interpreters are often expected to organise language into a clear and coherent message. In most situations, this is an essential part of the work.
Dementia can create moments where tidying the language would change important information.
A Deaf person may repeat themselves, move between subjects, use unclear references or produce signs that do not form a complete meaning. The confusion itself may be relevant to the healthcare professional’s assessment.
If the interpreter silently repairs the account, the professional may receive a much clearer version than the person actually expressed. They may miss evidence of a change in cognition, language or the effect of medication.
Emma advised interpreters to represent what they can see and clearly identify what remains uncertain. They might explain that the person used particular signs, repeated part of the information or moved between ideas, but that the interpreter cannot confidently construct a full meaning.
The professional can then decide whether to ask a different question, seek information from a family member or compare the interaction with earlier appointments.
Saying “I do not know” can therefore be a precise and responsible professional decision.
It is very different from giving up or failing to prepare. It means refusing to invent clarity that the interaction has not provided.
Preparation needs to include the people, not only the subject
Interpreters may arrive at dementia-related appointments with very little information. They may know the time and location but not the purpose of the meeting, the person’s current communication or who else will attend.
Emma suggested asking for a few minutes with the Deaf person before the formal discussion begins. This gives the interpreter a chance to observe their current language, establish rapport and notice whether they appear anxious or disengaged.
A short conversation with the professional can also help. What are they hoping to achieve? What questions will they ask? Is this a routine review, a cognitive assessment or a discussion about care?
This information allows the interpreter to anticipate the language, structure and emotional demands of the appointment.
Family members or carers may also be able to explain which signs the person currently uses, what communication methods work well and whether there have been recent changes.
This preparation does not require the interpreter to take over the meeting. It helps everyone understand that booking an interpreter is not the final step in arranging communication.
The professional, interpreter, family and carer may all need to work together.
Working with a Deaf relay interpreter
Emma encouraged participants to consider involving a Deaf relay interpreter where appropriate.
A Deaf relay interpreter may recognise older signs, regional vocabulary, visual communication strategies or patterns that a hearing interpreter does not understand. They may be able to connect with the Deaf person in a different way and work alongside the hearing interpreter and professionals.
This should not be seen as evidence that the original interpreter has failed.
The communication demands may simply require more than one form of professional knowledge.
The need for a Deaf relay interpreter should ideally be identified during booking and preparation, but it may also become clear once an interaction begins. Services need processes that allow additional support to be arranged rather than leaving one interpreter to manage an unsuitable situation alone.
The emotional and cognitive load on interpreters
Working with someone whose language has changed can be emotionally difficult, particularly when the interpreter has known them previously.
The interpreter may remember the person communicating clearly and now experience difficulty understanding them. They may feel grief, frustration or self-doubt.
Emma warned interpreters not to assume that the difficulty means they are no longer competent. Interpreting unclear or changing language demands considerable processing. The interpreter’s brain is continually trying to identify signs, connect ideas, monitor the interaction and decide how to represent uncertainty.
That increased cognitive demand can lead to fatigue and overwhelm.
The interpreter may also be holding the emotions of the family and professional while trying to remain available to the Deaf person. Afterwards, they may continue replaying moments they did not understand.
Emma recommended time to debrief, either with the professional team where appropriate or through professional supervision. A brief discussion after the appointment can identify communication issues and ensure concerns are handed back to the people responsible for the person’s care.
Supervision offers a confidential place to examine the emotional effect, professional decisions and any self-doubt that remains.
The aim is to leave the responsibility connected to the work rather than carrying all of it home.
What does this mean for translators?
Emma’s presentation focused on live communication, but translators also contribute to dementia support.
Deaf people and their families need accessible information about symptoms, diagnosis, assessments, care, legal planning and available support. A direct BSL translation of a complex written leaflet may not be enough.
Information may need to be divided into shorter sections, supported by examples and produced with older Deaf audiences in mind. Sign choices should consider generational language, and navigation needs to be clear for people who may find it difficult to retain or locate information.
Translators may also create resources for families and care staff about communicating with Deaf people living with dementia.
These materials should not assume that every Deaf person has the same language background or that one approach will continue to work throughout the condition.
Deaf translators, older Deaf people, carers and dementia specialists should all be involved in developing and reviewing these resources.
What are we passing on?
The theme for The Together Conference 2026 was Pick It Up, Pass It On.
Interpreters are often taught that their role is to understand the message and produce a clear interpretation. That remains an important professional aim, but Emma’s session showed why it cannot become an instruction to hide every uncertainty.
We need to pass on permission to say when meaning is unclear.
We can also pass on knowledge of older signs, changing communication methods and the value of Deaf relay interpreters. We can teach professionals that the person may not remember the interpreter but can still respond to the feeling of safety and connection created during the interaction.
Most importantly, we can pass on the understanding that dementia does not erase the person.
Their communication may change. Their memory may move between different periods of life. They may need more time or a different approach. They still have an identity, preferences and the right to be included in decisions about their own life.
New insights begin by listening differently
The theme for The Together Conference 2027 is New Insights, Shared Purpose.
Improving communication with Deaf people living with dementia will require shared work between Deaf communities, families, interpreters, translators, carers, healthcare professionals, researchers and service providers.
Perhaps you are researching dementia within a Deaf community or developing training for interpreters and care staff. You may be collecting older regional signs, producing accessible information or examining how cognitive assessments work through an interpreter.
You might have experience of a service that has adapted successfully, or one that still needs to understand what meaningful language access involves.
These experiences could contribute to The Together Conference 2027.
The Call for Papers opens on Monday 5 October 2026. You do not need to decide whether your proposal belongs in the live programme or the extended conference. Submit your idea and the review panel will consider where accepted contributions fit best.
Poster submissions will also be welcomed for developing research, professional resources, service projects, early findings and practice-based reflections.
Emma’s session showed that new insight does not always come from finding a definite answer. Sometimes it begins by recognising uncertainty, slowing the interaction down and listening differently.
Using this article for unstructured CPD
Please approach these questions with care if dementia is personally relevant to you.
What assumptions do you currently hold about dementia and communication?
How might dementia affect language, perception and a person’s understanding of time?
How would you respond if a Deaf person used signs from a generation or region you did not recognise?
When might physical demonstration be clearer than a signed explanation?
How could you establish rapport without expecting the person to remember you?
What information would you seek before accepting a dementia-related assignment?
How could family members or carers support communication without speaking for the Deaf person?
What would you do if a family member asked you to withhold information?
When could a Deaf relay interpreter contribute additional knowledge?
How would you represent a message that you could not fully understand?
Have you ever felt pressure to make unclear communication sound more coherent?
How might doing so affect a professional’s assessment?
What emotional or cognitive impact could this work have on you?
What supervision or debriefing arrangements would you put in place?
Is there a project, resource or experience from your work that could become a 2027 conference proposal or poster?
A short professional reflection on these questions could be recorded as part of your unstructured CPD.
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