Friday, 22 June 2018

The everyday care of people living with dementia during a hospital admission – understanding resistance to care

The everyday care of people living with dementia during a hospital admission – understanding resistance to care 

Our first study is ‘Investigating the management of resistance and refusal of care in people with dementia admitted to hospital with an acute condition’. We have received £447,000.00 from the NIHR HS&DR researcher led funding stream. Katie Featherstone is the lead investigator. 

During a hospital admission, people living with dementia often resist and refuse care (often labelled resistance, resistive behaviours, or rejection of care). Professional and family carers can find resistance and refusal to care difficult to manage and importantly it has implications for a person’s health and wellbeing. For example, food refusal can lead to malnutrition, which is associated with poor clinical outcomes, reduced quality of life and increased length of hospital stays. Whilst, there is a large number of studies examining this issue within community and long-term care, little is known about how clinical teams in acute hospitals respond when they believe a person living with dementia is resisting or refusing care. In addition, evidence suggest that the quality of nursing care is highly dependent on its wider social and organisational context, and until now, the particular contextual factors relevant to this important aspect of care have not previously been identified. 

In response, we (Katie and Andy Northcott) have spent 18 months observing everyday care in hospital wards. We used an in-depth ethnographic approach to examine and observe the everyday work of nurses and healthcare assistants within wards to explore how they respond when people living with dementia resist and refuse food, drink and medicines. We have focussed on wards known to have a significant number of people admitted with cognitive impairment (Medical Admissions Unit and Orthopaedic wards) within a sample of 5 hospitals in England and Wales. Ethnography is particularly useful when exploring complex and sensitive topics in health care. 

Our analysis has identified the ways in which the social organisation of care can be structured to improve patient and family experiences and to support ward staff. We identified high levels of resistance to care amongst people living with dementia within acute hospital wards. We found that every person living with dementia we observed within an acute hospital ward resisted care at some point during their admission. 

We found that 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 the ways in which wards were organised and the delivery of care and was typically rational to that person. In response, nurses and HCAs using multiple interactional approaches that combined highly repetitive language with a focus on completing essential care on the person’s body, with a focus on the containment and restraint of the person in their bed or at the bedside. These approaches to patient care were both a response to resistance but also frequently the trigger of resistance, creating cycles of stress for patients, families, and ward staff. 

We are currently using these findings to inform the development of simple no-cost innovations that can inform ward care at the interactional and organisational levels. We are piloting these simple interventions within one ‘laboratory’ acute ward with the goal of improving care for people living with dementia and also to support ward staff.
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