Title: MemoryCare: Investigating the management of refusal of care in people with dementia admitted to hospital with an acute condition
Funder: Health and Care Research Wales (Welsh Government)

Abstract: This study is an investigation of refusal and resistance to food, drink and medicines by people with dementia (PWD) admitted to an acute hospital with a co-morbid condition. People with dementia over 65 years of age need to use up to one quarter of acute hospital beds at any one time (Alzheimer’s Society, 2009). They are also the group most at risk of delayed discharge (Barker and Halliday, 2005). However, PWD do not fit comfortably within this setting and staff routinely consider this patient group should be transferred to other services (Tadd et al, 2011; Moyle et al, 2008). A more realistic solution than transfer is to examine how the needs of PWD might be better met in an acute hospital setting. This solution is urged by consumer groups lobbying to improve the experience of PWD 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. Common features of dementia include behavioural and psychological symptoms (BPSD), which are reported in up to 90% of PWD. We are interested in examining a common feature of BPSD, managed by healthcare workers on a daily basis: refusal of care (labelled resistance, resistive behaviours or rejection of care) (Kable et al, 2012). Professional and family carers can find refusal and resistance to care time consuming and difficult to manage and importantly it has implications for outcomes. For example, food refusal can lead to malnutrition, which is associated with poor clinical outcomes, reduced quality of life and increased hospital stays. Whilst, there is 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 PWD is refusing care. Similarly, while the evidence base is growing that nursing care is highly dependent on its wider social and organisational context, the particular contextual factors relevant to this important aspect of care have not previously been identified. In response, this study will use an in-depth ethnographic approach to examine the work of nurses and healthcare assistants who are responsible for feeding and medications within wards to explore how they respond to refusal of food, drink and medicines in PWD. We will focus on wards known to have a large number of people with cognitive impairment (Medical Admissions Unit and Orthopaedic wards) within a purposive sample of 5 UK hospitals. Ethnography is particularly useful when exploring complex and sensitive topics in health care. Our analysis will identify ways in which the social organisation of nursing care and care processes can be structured to support adequate nutritional intake and drug concordance to improve patient and family care experience and the effectiveness of treatments. In long-term care settings, BPSD can be effectively managed using psychosocial interventions. There may be potential for existing educational and organisational interventions to be tailored for the acute setting. The proposed study will provide an empirically informed theoretical underpinning for the development of a follow-up programme of work to develop and test innovation in service organisation and clinical interventions to improve the care and support of PWD who refuse care within the acute hospital setting.

Lay abstract: This study will give us concrete examples of how all hospital staff who care for people with memory problems, interact with them during their stay in hospital. We are particularly interested in why people who have memory problems are sometimes reluctant to accept food, drink or medicines when they are in hospital and how the staff try to overcome these problems. This research will involve observing everyday clinical work in the ward, including ward rounds, consultations, case reviews and clinical meetings to understand how they care for patients who are reluctant to eat and drink, and how they try and engage the PWD to accept what they are being offered. We will also ask staff questions about their work to understand what they are doing and why, and explore with them their practice and in particular what influences their approach when interacting with PWD and their carers. We will also listen to what impact the hospital stay and the refusal of care has on the PWD and their carers in their own words. Importantly, this study will identify and make recommendations for best practice to ensure that PWD have an adequate intake of food, drink and medicines so that the patient’s health outcomes and the family experience improve overall, even when the clinical environments in acute care vary.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL