Hospital conversations can distress people with dementia – here’s why

Imagine trying to ask a question and no one answers you. Or hearing people talk around you as if you are not really part of the conversation. For many people living with dementia in hospital, this is a common experience.

Dementia affects many aspects of communication. In the early stages, someone may struggle to find the right word to describe something. As the condition progresses, their speech can become harder for others to understand. But difficulty expressing thoughts does not necessarily mean that a person has stopped understanding how conversations work.

Communication problems can cause distress in many settings. Hospitals, particularly acute wards, can be especially challenging. Acute wards care for people admitted with sudden or severe medical conditions, and staff are often focused on urgent treatment. Many staff members may not have specialist training in dementia care.

Patients with dementia may not recognise that they are in hospital or understand why they are there. Some may also lack the legal capacity to make decisions about their care. In these circumstances, it can be easy for staff to assume that communication is severely impaired and that the usual rules of conversation no longer apply.

But our research suggests this assumption is often wrong. Even people with advanced dementia can recognise when those conversational rules are ignored, and this can increase their distress.

For the past ten years, my colleagues and I have been studying everyday interactions on hospital wards. With patients’ and families’ consent, we recorded video of routine encounters between staff and patients with dementia. These recordings allow us to examine, in detail, how communication unfolds in real time.

Respectful communication

Using these videos, we have identified several common communication challenges. These include how staff bring conversations to a close in a way that feels respectful, how they respond when a patient’s speech is difficult to understand and how they handle situations where a patient believes they are somewhere else or living in a different time. More recently, our work has focused on a broader idea known as “interactional competence”.

Interactional competence refers to the basic skills people use to take part in conversation. These include recognising when it is someone’s turn to speak, understanding that questions usually require answers and noticing when a response does not fully address what was asked. These patterns are so familiar that most of us follow them automatically.

Although dementia can affect a person’s ability to express themselves clearly, these deeper conversational skills can remain intact for longer than people might expect. For example, a person with dementia may understand that a question requires a response, even if the answer they give is unclear or does not make sense to others. Our research shows that people with dementia can also recognise when the person they are speaking to does not follow these conversational norms.

We identified three ways this happens.

First, people with dementia can recognise when their questions are not answered. Their questions may sometimes be unexpected or difficult to interpret. For instance, a patient might ask a nurse, “Can you call the police?” Staff may be unsure how to respond, or they may delay answering while they try to work out what the patient means. But if the question is ignored or left unanswered for too long, the patient often repeats or pursues it, signalling that they are aware their question has not been addressed.

Second, people with dementia can recognise when a question receives an incomplete or inadequate response. In everyday conversation, when we refuse a request, we usually explain why. For example, if someone asks us to pass them an object we cannot reach, we might say, “Sorry, I can’t reach it.” If we do not provide an explanation, people often ask for one.

A similar pattern occurs on hospital wards. If a patient with dementia asks to go home, staff might respond by saying, “I know you want to go home.” While this acknowledges the patient’s feelings, it does not actually answer the request. Alternatively, staff might say, “I can’t take you home,” without explaining why. Patients with dementia can recognise that these responses are incomplete, and this can lead to frustration or distress.

Third, people with dementia can recognise the inappropriate use of the word “we” when staff suggest actions. In healthcare settings, staff often use “we” when proposing an activity, such as “Shall we sit up?” or “Shall we take some medicine?” Sometimes this language can be helpful. If a nurse says “Shall we try a sip?” while helping someone hold a cup, the shared wording can reduce anxiety and make the task feel collaborative.

However, problems arise when “we” is used in situations that are not truly collaborative. For example, saying “Shall we get back into bed?” when the staff member is not getting into bed with a patient can feel confusing. Our recordings show that patients with dementia sometimes challenge or resist these suggestions, indicating that they recognise the mismatch between the language used and the specific situation.

Hospital wards can be confusing and distressing environments for people with dementia. While dementia affects communication, the outcome of any interaction depends greatly on how the other person responds.

Our research suggests that small changes in communication can make a meaningful difference. Answering questions carefully, explaining the reasons for actions or decisions, and using collaborative language only when it genuinely applies can all help reduce distress.

Perhaps most importantly, our findings remind us that even when a person’s speech seems confused or difficult to understand, they may still retain important conversational skills. Recognising this can help staff respond more effectively.

Because these communication practices can be clearly identified, they can also be taught. Based on our findings, we have developed an online training programme for healthcare staff. Although our research was carried out in hospitals, the lessons apply more widely. Anyone who cares for or supports a person with dementia can benefit from understanding how everyday conversation shapes their experience.

Alison Pilnick receives funding from NIHR to carry out research to improve communication with people with dementia in the acute hospital setting.