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NIHR Signal Steps to better understanding resistant behaviours and the culture of bedside dementia care in hospitals

Published on 13 June 2019

doi: 10.3310/signal-000779

High levels of resistance to care by people with dementia can be exacerbated by responses by staff on the wards. This study sought to understand the interactions and culture underlying care by closely observing and documenting what was actually happening on ten wards in five UK hospitals, and through interviews with carers and families.

This in-depth study confirmed that people living with dementia are often resistant to care in acute hospital settings. Behaviour included wandering in wards, pulling out equipment or refusing food or medicines. This is difficult for staff given the focus on structured ward activity. Typical staff strategies such as repeating instructions or attempting to contain patients often reinforced cycles of stress and anxiety. Ward staff often saw resistance as a feature of the dementia diagnosis, without always recognising the needs of individual patients.

This NIHR-funded UK study found that small interventions that are easy to implement had potential to change ingrained ward behaviour and strengthen staff understanding and care of patients with dementia.

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Why was this study needed?

Patients living with dementia occupy at least a quarter of acute hospital beds in the UK. Challenging behaviour and resistance to some aspects of care is a common behaviour in this group.

Poor understanding amongst healthcare staff of how to care for people with dementia often leads to frustration and alienation. Hospitalised people with dementia are more likely to experience a lack of dignity and respect and poorer standards of care at some stage of their care pathway. On average, they stay twice as long as other patients of the same age, leaving them vulnerable to a rapid decline in health.

A better understanding is needed of resistance to care by people with dementia on acute hospital wards, such as refusing to take medicine, from the perspective of ward staff, patients and carers. This study aimed to identify how the quality of nursing care can be improved.

What did this study do?

This thorough study focussed on interactions at the hospital bedside to gain a better understanding of the context in which refusal of care occurs and how clinical teams respond. Five acute hospitals participated from across England and Wales.

Observations were conducted at the bedside and focussed on everyday care, medication rounds and mealtimes within 10 wards regularly admitting people with dementia for acute conditions. Interviews during observation were undertaken with 436 nursing staff, healthcare assistants and clinical staff. Case studies were compiled from 71 interviews with 10 participants and 37 interviews with their carers and family members.

This study is limited by the potential for participant behaviour on the wards to have been changed by the researchers’ presence, but strengthened by the large number of interviews conducted.

What did it find?

  • High levels of resistance or refusal of care are common in people living with dementia within acute hospital wards. Every person living with dementia observed during the study resisted care at some stage of their hospital stay.
  • Where patients are known to have dementia, staff tend to put all adverse behaviour down to dementia and do not reflect on patient capacity or the validity of the patients’ views. Resistance to care is usually not a feature of a dementia diagnosis, but a reaction to the way care is being delivered at the bedside.
  • Common ward staff responses to challenging behaviour included repeated instructions, raised voices, containment of patients to their bed and bedside area, and continued attempts to complete tasks that had previously been rejected by the patient.
  • The well-established timetables and routines of acute wards lack flexibility and do not appear to fit the needs of people living with dementia.
  • The majority of nursing staff in the study identified lacking the relevant skills and knowledge needed for working with this patient population.

What does current guidance say on this issue?

There are few UK guidelines focussing specifically on the care of people with dementia in acute hospital settings. NICE guidelines on dementia support refer to hospital care but lack detail.

Education is clearly a key component in understanding dementia, and the most useful guidance is available within learning resources and factsheets produced by NHS Scotland, University Hospitals Leicester and the Alzheimer’s Society.  These cover good practice in caring for people with dementia in hospital and focus on understanding dementia and the provision of holistic, person-centred practice. Living well with dementia: a national dementia strategy (2009) suggested having one person, a champion, who is responsible for dementia services in a hospital.

What are the implications?

Ward routines make it difficult for people with dementia to communicate concerns. Ward staff should not assume that resistant behaviours are always due to dementia.

Dementia patients often refuse care in hospital. This is often because of how care is delivered in highly structured ward environments. Ward staff often respond to resistance in ways that increase stress and anxiety in patients – by raised voices, repeated instructions and containment. These responses often trigger further resistance, setting up cycles of resistance.

Quality of healthcare on acute hospital wards can be improved by introducing small interventions that focus on communication, mealtimes and hydration, and movement and rehabilitation. Increased flexibility to routines, dementia friendly practices and dementia-related staff training can develop ward cultures that positively impact the ward team, patients living with dementia and their families.

This study has the potential to inform future guidance and will be of relevance for ward staff, ward managers and policy directors.

Citation and Funding

Featherstone K, Northcott A, Harden J et al. Refusal and resistance to care by people living with dementia being cared for within acute hospital wards: an ethnographic study. Health Serv Deliv Res. 2019;7(11).

This study was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/10/80).

Bibliography

Alzheimer’s Society. Hospital care: factsheet 477LP. London: Alzheimer’s Society; 2015.

Alzheimer’s Society. Fix dementia care: hospitals. London: Alzheimer’s Society; 2016.

Department of Health. Living well with dementia: a national dementia strategy. London: Department of Health; 2009.

Care Quality Commission. The state of health care and adult social care in England in 2013/14. London: The Stationery Office; 2014.

Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry: executive summary. London: The Stationery Office; 2013.

NICE. Dementia: assessment, management and support for people living with dementia and their carers. NG97. London: National Institute for Health and Care Excellence; 2018.

NHS Education for Scotland. Supporting people with dementia in acute care: learning resource. Edinburgh: NHS Education for Scotland; 2016.

University Hospitals of Leicester. Caring for people with dementia in acute care setting: a resource pack for staff. Leicester, University Hospitals of Leicester; 2011.

Vizard P and Burchardt T. Older people’s experiences of dignity and nutrition during hospital stays: secondary data analysis using the adult inpatient survey. CASEreport 91. London: Centre for Analysis of Social Exclusion, London School of Economics and Political Science; 2015.

Why was this study needed?

Patients living with dementia occupy at least a quarter of acute hospital beds in the UK. Challenging behaviour and resistance to some aspects of care is a common behaviour in this group.

Poor understanding amongst healthcare staff of how to care for people with dementia often leads to frustration and alienation. Hospitalised people with dementia are more likely to experience a lack of dignity and respect and poorer standards of care at some stage of their care pathway. On average, they stay twice as long as other patients of the same age, leaving them vulnerable to a rapid decline in health.

A better understanding is needed of resistance to care by people with dementia on acute hospital wards, such as refusing to take medicine, from the perspective of ward staff, patients and carers. This study aimed to identify how the quality of nursing care can be improved.

What did this study do?

This thorough study focussed on interactions at the hospital bedside to gain a better understanding of the context in which refusal of care occurs and how clinical teams respond. Five acute hospitals participated from across England and Wales.

Observations were conducted at the bedside and focussed on everyday care, medication rounds and mealtimes within 10 wards regularly admitting people with dementia for acute conditions. Interviews during observation were undertaken with 436 nursing staff, healthcare assistants and clinical staff. Case studies were compiled from 71 interviews with 10 participants and 37 interviews with their carers and family members.

This study is limited by the potential for participant behaviour on the wards to have been changed by the researchers’ presence, but strengthened by the large number of interviews conducted.

What did it find?

  • High levels of resistance or refusal of care are common in people living with dementia within acute hospital wards. Every person living with dementia observed during the study resisted care at some stage of their hospital stay.
  • Where patients are known to have dementia, staff tend to put all adverse behaviour down to dementia and do not reflect on patient capacity or the validity of the patients’ views. Resistance to care is usually not a feature of a dementia diagnosis, but a reaction to the way care is being delivered at the bedside.
  • Common ward staff responses to challenging behaviour included repeated instructions, raised voices, containment of patients to their bed and bedside area, and continued attempts to complete tasks that had previously been rejected by the patient.
  • The well-established timetables and routines of acute wards lack flexibility and do not appear to fit the needs of people living with dementia.
  • The majority of nursing staff in the study identified lacking the relevant skills and knowledge needed for working with this patient population.

What does current guidance say on this issue?

There are few UK guidelines focussing specifically on the care of people with dementia in acute hospital settings. NICE guidelines on dementia support refer to hospital care but lack detail.

Education is clearly a key component in understanding dementia, and the most useful guidance is available within learning resources and factsheets produced by NHS Scotland, University Hospitals Leicester and the Alzheimer’s Society.  These cover good practice in caring for people with dementia in hospital and focus on understanding dementia and the provision of holistic, person-centred practice. Living well with dementia: a national dementia strategy (2009) suggested having one person, a champion, who is responsible for dementia services in a hospital.

What are the implications?

Ward routines make it difficult for people with dementia to communicate concerns. Ward staff should not assume that resistant behaviours are always due to dementia.

Dementia patients often refuse care in hospital. This is often because of how care is delivered in highly structured ward environments. Ward staff often respond to resistance in ways that increase stress and anxiety in patients – by raised voices, repeated instructions and containment. These responses often trigger further resistance, setting up cycles of resistance.

Quality of healthcare on acute hospital wards can be improved by introducing small interventions that focus on communication, mealtimes and hydration, and movement and rehabilitation. Increased flexibility to routines, dementia friendly practices and dementia-related staff training can develop ward cultures that positively impact the ward team, patients living with dementia and their families.

This study has the potential to inform future guidance and will be of relevance for ward staff, ward managers and policy directors.

Citation and Funding

Featherstone K, Northcott A, Harden J et al. Refusal and resistance to care by people living with dementia being cared for within acute hospital wards: an ethnographic study. Health Serv Deliv Res. 2019;7(11).

This study was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/10/80).

Bibliography

Alzheimer’s Society. Hospital care: factsheet 477LP. London: Alzheimer’s Society; 2015.

Alzheimer’s Society. Fix dementia care: hospitals. London: Alzheimer’s Society; 2016.

Department of Health. Living well with dementia: a national dementia strategy. London: Department of Health; 2009.

Care Quality Commission. The state of health care and adult social care in England in 2013/14. London: The Stationery Office; 2014.

Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry: executive summary. London: The Stationery Office; 2013.

NICE. Dementia: assessment, management and support for people living with dementia and their carers. NG97. London: National Institute for Health and Care Excellence; 2018.

NHS Education for Scotland. Supporting people with dementia in acute care: learning resource. Edinburgh: NHS Education for Scotland; 2016.

University Hospitals of Leicester. Caring for people with dementia in acute care setting: a resource pack for staff. Leicester, University Hospitals of Leicester; 2011.

Vizard P and Burchardt T. Older people’s experiences of dignity and nutrition during hospital stays: secondary data analysis using the adult inpatient survey. CASEreport 91. London: Centre for Analysis of Social Exclusion, London School of Economics and Political Science; 2015.

Refusal and resistance to care by people living with dementia being cared for within acute hospital wards: an ethnographic study

Published on 19 March 2019

Featherstone K, Northcott A, Harden J, Harrison Denning K, Tope R, Bale S & Bridges J.

Health Services and Delivery Research Volume 7 Issue 11 , 2019

Abstract Background The acute hospital setting has become a key site of care for people living with dementia. The Department of Health and Social Care recognises that as many as one in four acute hospital beds in the UK will be occupied by a person living with dementia at any given time. However, people living with dementia are a highly vulnerable group within the hospital setting. Following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to understand the role and needs of health-care staff caring for this patient population and to explore what constitutes ‘good care’ for people living with dementia within the acute setting. Objectives The focus of this study was a common but poorly understood phenomenon within the acute setting: refusal and resistance to care. Our research questions were ‘How do ward staff respond to resistance to everyday care by people living with dementia being cared for on acute hospital wards?’ and ‘What is the perspective of patients and their carers?’. Design This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to understand how ward staff responded to the care needs of people living with dementia and to follow the consequences of their actions. Setting This ethnography was carried out on 155 days (over 18 months) in 10 wards within five hospitals across England and Wales, which were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments. Participants In addition to general observations, 155 participants took part directly in this study, contributing to 436 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. Results We identified high levels of resistance to care among people living with dementia within acute hospital wards. Every person living with dementia observed within an acute hospital ward resisted care at some point during their admission. Limitations Limitations identified included the potential for the Hawthorne or researcher effect to influence data collection and establishing the generalisability of findings. Conclusions Ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. However, resistance to care was typically a response to ward organisation and delivery of care and was typically rational to that person’s present ontology and perceptions. In response, nurses and health-care assistants used multiple interactional approaches that combined highly repetitive language with a focus on completing essential care on the body, which itself had a focus on the containment and restraint of the person in their bed or at their bedside. These approaches to patient care were a response to resistance but also a trigger for resistance, creating cycles of stress for patients, families and ward staff. The findings have informed the development of simple, no-cost innovations at the interactional and organisational level. A further study is examining continence care for people living with dementia in acute hospital settings. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Expert commentary

In this thought-provoking study of resistance to care among people with dementia, the authors carried out an extensive ethnographic study of people with dementia on acute medical admissions units and trauma and orthopaedic wards.

The particularly striking finding was of how the mobility of people with dementia around the ward is frequently restricted, using strategies such as placing patient trollies in front of the patient’s chair.

This can lead to a cycle of immobility and loss of independence. A change in ward culture is needed, and the authors are developing simple, no-cost interventions to improve the situation.

Louise Allan, Professor of Geriatric Medicine, University of Exeter

The commentator declares no conflicting interests

Expert commentary

The value of this study is the way in which it challenges the view that ‘refusal and resistance’ is inevitable when caring for patients with dementia in acute hospitals.

This in-depth ethnography gets under the surface of seemingly non-compliant behaviour. It explains how the initial interpretation by staff of behaviours as resistive, can lead to a culture of containment and restraint. By highlighting that ward staff must be supported to develop the skills to respond with appropriate communication and psychosocial techniques, this study has the potential to lead to improvements in practice.

One limitation of this research is its focus on two negative aspects of care, namely resistance and refusal. An exploration of care more generally, would have not only led to a more rounded view, but also had the potential to identify key elements of good practice, thereby demonstrating how things might be improved.

Dr Clare Abley, Nurse Consultant & Honorary Clinical Senior Lecturer, Newcastle University

The commentator declares no conflicting interests