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This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.

More than a quarter of hospital patients have dementia and many refuse food, drink, medication or requests to be examined. This presents healthcare professionals with a dilemma. They need to strike a balance between respecting a patient’s wishes, while also delivering effective care.

New research included people with dementia who needed acute care in hospital. Researchers looked at different ways of asking them to perform tasks or to agree to requests. They found that having a range of ways of making requests led to more positive responses from patients who were confused or resisting care.

Professionals' phrasing, tone and question construction altered the chance of a positive response. Phrases such as “I was wondering…” displayed doubt and increased refusals. By contrast, “I am just going to…Is that alright?” implied that a task was about to happen and increased agreement.

The findings have been used to develop training materials to help professionals improve the way they communicate with hospital patients who have dementia.

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What’s the issue?

One in four inpatients in UK hospitals is estimated to be living with dementia. Healthcare professionals face significant challenges in communicating with these patients as they endeavour to deliver high quality, person-centred, care.

Policymakers and carers have raised the issue of communication between hospital staff and people with dementia. Even so, health and care professionals receive little or no training on how to best communicate.

It may be difficult to tell whether a hospital patient with dementia is deliberately rejecting a request or refusing to respond; is simply unable to respond; or is agitated or frightened because of the unfamiliar and busy hospital setting they find themselves in.

However, such refusals may worsen their condition, increase their stay in hospital, or even cost them their life.

There has been little previous research into communication with people living with dementia. The current study was part of the larger VOICE programme, which is producing communication skills training for healthcare professionals caring for people with dementia in hospital.

What’s new?

This study explored responses to requests by healthcare professionals to carry out tasks such as eating, drinking, personal care, giving medication, and rehabilitation. It was based on 41 video recordings of interactions between people with dementia and nurses, medical staff and allied health professionals. More than 600 requests made by professionals were recorded.

Researchers analysed the conversations to identify which approaches worked best. In 28 of the 41 recordings, patients showed some level of refusal: outright refusal, unclear response or no response. Patients sometimes indicated that they lacked ability, were unwilling, or did not see the need to perform a task. Sometimes, they just said “no”.

This study showed that the phrasing, tone and question construction used by professionals could make refusal more or less likely. Specifically:

  • Requests that allowed the option for refusal often led to refusal. For example, requests which started, “Is it OK if I…?” or “I was just wondering if…” displayed doubt about the importance of the task and were more likely to lead to refusal.
  • Where professionals sounded entitled to make a request, and phrased it as an instruction, patients were more likely to agree. The entitlement was softened with the permission-seeking “is that alright?”
  • Being clear about the size or effort involved in the task with phrases such as “it’ll only take a minute” could reassure patients. Words like “just” helped to minimise the task.
  • Inviting the patient to "try" to perform a task worked well.

Successful requests were framed in various ways: from encouraging or suggesting a patient perform a task; to statements of why they need to carry it out; or direct instructions.

The study acknowledged there is no single way of requesting an action that will always lead to acceptance or agreement by the patients. But it offered healthcare professionals a selection of approaches to draw on to adapt their communication method.

Why is this important?

Many patients living with dementia do not fully understand why they are in hospital and/or the consequences of refusing care. Declining treatment can impact on their care, the length of their hospital stay and on the clinical outcome.

Repeated refusals also affect job satisfaction for health and care professionals. They increase stress and are time-consuming.

Training in communication techniques can lead to better compliance from dementia patients. Healthcare professionals with more skills and a wider range of approaches will feel more confident when caring for hospital patients with dementia.

The study also stressed that no manner of verbal requesting would ultimately override a patient’s right to refuse to comply with a request.

What’s next?

Based on this research, training programmes have been designed and delivered to healthcare professionals to help them communicate more effectively with hospital patients with dementia. Researchers developed an e-learning resource to help explain this work on refusals and requests.

Future research will investigate the best staff responses to specific aspects of patients’ behaviour such as agitation, distress, confusion, and aggression. Researchers also want to study whether changing staff communication patterns could actually lead to better patient outcomes.

You may be interested to read

The full paper: O’Brien R, and others. When people living with dementia say ‘no’: Negotiating refusal in the acute hospital setting. Social Science & Medicine. 2020;263:113188

Training materials: Advanced communication: communicating with a patient with dementia who is refusing care, The University of Nottingham 

The VOICE (videoing to improve communication through education) feasibility study: O'Brien R, and others. The VOICE study – A before and after study of a dementia communication skills training course. PLoS ONE. 2018;13:e0198567

The VOICE study website, The Institute of Mental Health, Nottingham

NICE guidance: Dementia: assessment, management and support for people living with dementia and their carers [NG97] (2018), which covers diagnosing and managing dementia

Allwood R, and others. Should I stay or should I go? How healthcare professionals close encounters with people with dementia in the acute hospital setting. Social Science & Medicine. 2017;191:212–225

Barnes RK. Conversation Analysis of Communication in Medical Care: Description and Beyond. Research on Language and Social Interaction. 2019;52:300-315

Funding: This study was funded by the NIHR Health Services and Delivery Research programme.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

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