Research Programme

Resistance Study

Underserved and overlooked: Investigating the management of refusal of care in people with dementia admitted to hospital with an acute condition.

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. In the UK there are an estimated 750,000 PWD, with this projected to rise to over 1 million by 2025 (Alzheimer’s Society, 2011).

PWD are known to be undertreated for co-morbid conditions such as cancer and arthritic pain, leading to unnecessary suffering, carer burden and healthcare costs.

UK health policy emphasizes the importance of keeping PWD out of hospital, however, when PWD have an acute co-morbid condition, such as a suspected heart attack or hip fracture, hospital admission is unavoidable.

It is estimated that PWD are currently using up to one quarter of acute hospital beds at any one time. Hospitals focus on fixing acute injury or illness, which requires patient concordance. However, PWD do not fit comfortably within this setting and staff routinely consider this patient group do not belong (Tadd et al, 2011) and should be transferred to other services (Moyle et al, 2008).

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 which is managed by healthcare workers on a daily basis; refusal of care (also labelled as resistance, resistive behaviours or rejection of care).

It is characterised as non-compliant behaviour in response to healthcare staff (Kable et al, 2012) and PWD often refuse medications, food and personal care such as toileting, bathing and shaving as well as diagnostic or therapeutic procedures.

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 PWD.

For example, food refusal can lead to malnutrition, which is associated with poor clinical outcomes that include greater morbidity and mortality, reduced quality of life and increase hospital stays. 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 PWD is refusing care.

The evidence base to inform the organisation and delivery of this care is limited. The proposed research seeks to understand how nutritional care and medicines concordance might be improved for PWD in hospital. There is sound evidence that both adequate nutrition and drug treatments improve clinical and patient reported outcomes.

In response, this study will use an in-depth ethnographic approach to examine the work of nurses and healthcare assistants (HCAS) and other clinical staff 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 care settings known to have a large number of people with cognitive impairment (Medical Admissions Unit (MAU) and Orthopaedic wards) within a purposive and maximum variation sample of 5 hospitals across the UK.

Ethnography will enable an in-depth evidence based description of the management and context of food and drink refusal and medication refusal.

This understanding will be examined in the context of a narrative synthesis of policy, practice guidelines and the existing literature about refusal of care more widely.

Importantly, our analysis will identify ways in which the social organisation of nursing care and care processes can be structured to best effect support that facilitates adequate nutritional intake and drug concordance to improve patient and family care experience and the effectiveness of treatments.

Recommendations will be made for best practice and innovation/intervention at service organisation and clinical practice levels that could improve patient experience and health outcomes in the acute setting.

In long-term care settings, the behavioural and psychological symptoms experienced by PWD 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 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.