Refusal and resistance

Refusal and resistance

Dementia care is often thought of as taking place in the community, or in specialist settings and long-term care. However, as many as one in four acute hospital beds are occupied by a person with dementia, with some hospitals reporting that up to 50% of acute admissions may also have a diagnosis of dementia.

People with dementia are highly vulnerable within hospital settings, where functional abilities can deteriorate quickly. They are more likely to experience a delayed discharge, more likely to be readmitted and are at much higher risk of dying.

This study examined a common but poorly understood phenomenon within the acute setting: refusal and resistance to care. This can include getting out of bed, trying to leave the ward or hospital, shouting, and refusing food or medicine.

Reactions such as these were typically rational to the patient's perceptions. But ward staff typically interpreted resistance as a feature of a dementia diagnosis, which overshadowed the person. Chronic and disruptive resistance was viewed as a feature of the patient's identity, which could become their principal identity in the context of the ward.

The study found that refusals were "viewed by staff as problematic, difficult, signifying a lack of capacity, and, because they do not ‘fit’ the organisation and timetabled routines of the ward, as something that must be overcome or managed".

Staff responded with highly repetitive language, instructions to be obeyed, and containment of the person at the bedside. Raising the side rails of the bed or tucking bed sheets in tightly around the patient were common means of containing a patient within the bed. For patients sitting at the bedside, the close placement of the mobile tray table or unreachable walking frames and technologies such as chair alarms were used to contain people and keep them sitting in their bedside chair.

These approaches "created damaging cycles of stress for patients, families and ward staff". Furthermore, "approaches to… patient containment at the bedside were a response to resistance but also frequently the trigger for resistance or patient anxiety".

The study concludes that there are "powerful cultures of containment and restraint, with... work in the ward driven by the organisational demands of delivering care within fixed routines and timetables that do not meet the needs of people living with dementia". In response, the authors are developing "simple, no-cost innovations at the interactional and organisational level within wards that can be introduced and used by nurses and HCAs". The feasibility of these is currently being tested within one acute ‘laboratory’ ward.

You can download the report via our website.