Wednesday, 3 May 2017

Current Study

Investigating the management of refusal of care in people with dementia admitted to hospital with an acute condition

Funded by the NIHR HS&DR researcher led funding stream, £447,000.00. This project started in February 2015

Why this research is needed now 

The Francis report (2013) provides compelling evidence of the failure of the acute hospital setting to meet the needs of older people, including people with dementia. Response to the report has included recognition that quality care is about more than meeting financial targets. Across the UK, NHS providers are revising organisational strategies and delivery plans to increase focus on patient experience. In the case of people with dementia, improving their experience of acute hospital admission has the potential to i) enhance quality of care ii) improve clinical outcomes (effectiveness of treatments) and iii) lead to cost savings (through greater efficiency in bed use). Understandings of how to minimise refusal of nutritional care and medications in an acute hospital setting is needed now.

Currently there are over 750,000 people with dementia in the UK, with this projected to rise to over 1 million by 2025 (Alzheimer’s Society, 2011; NAO, 2007). People with dementia over 65 years of age currently occupy up to one quarter of acute hospital beds at any one time (Alzheimer’s Society, 2009) and they are also the group most at risk of delayed discharge (Barker and Halliday, 2005).

Professional and family carers can find refusal and resistance to care time consuming and difficult to manage. Although evidence suggests staff consider this patient group do not belong in acute hospitals (Tadd et al, 2011) and should be transferred to other services (Moyle et al, 2008), when someone with dementia has an acute condition, such as a hip fracture, they require treatment that is only available in an acute hospital. A more realistic solution than transfer is to examine how the needs of people with dementia might be better met within the acute hospital setting. This solution is urged by consumer groups lobbying to improve the experience of people with dementia and their carers (Alzheimer's Society, 2008; Patients Association, 2010) and government enquiries (National Confidential Enquiry for Patient Deaths, 2009; Care Quality Commission, 2013). It is also the solution reflected in policy documents. Yet there are recent reports of inappropriate, sub-optimal or even unkind management of people with dementia in acute hospital settings, findings corroborated by our Carers Steering Group.

New approaches are needed for improving what happens to people with dementia in acute hospitals. The relevance of a study that attends to the question of how and why refusal of nutritional care and medicines occurs, lies in the immediate need to find solutions to the poor treatment outcomes and reported experience of people with dementia compared to other patient groups. Solutions that improve quality of care, are low cost, and can be easily integrated with existing social organisation of nursing care and care processes.

Refusal, resistance and rejection of care 

This study examines a specific and common feature of dementia, which is managed by nurses and HCAs on a daily basis within the acute setting: refusal of care (Ishii et al, 2012). Refusal of care (also labelled as resistance, resistive behaviours or rejection of care) is characterised as non-compliant behaviour in response to healthcare staff (Kable et al, 2012), worsening with disease progression (Volicer et al. (2007). A review concluded that it is triggered by specific features of the way care is provided by healthcare staff, particularly in the context of daily care provision (Ishii et al, 2012). People with dementia can refuse medications, food and personal care, all commonly perceived by clinical staff as a deviant behavior (Dawson and Reid, 1987) with this group commonly labelled “difficult” (Moyle et al, 2008) within the acute setting.

Professional and family carers can find refusal and resistance to care time consuming and difficult to manage and importantly it has implications for morbidity, mortality and quality of life for people with dementia. Whilst, there is already a large body of literature examining primary and long-term service provision, little is known about how clinical teams in acute hospitals respond when they believe a person with dementia is refusing care.

In response, this project will provide in-depth evidence based knowledge about the management of refusal and resistance to care, in particular food refusal and medication refusal. It will provide an analysis of the organisational and interactional factors that impact on nurses, HCAs and clinical staff responses to refusal of care amongst patients with co-morbid dementia, a large and overlooked patient population within the acute hospital setting. This detailed research is required to understand and to explore what constitutes ‘good care’ within the acute setting to inform the development of future interventions.
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