Sunday, 22 April 2018

Research report




Summary Results: Our evidence based investigation examining the care people living with dementia receive following an acute hospital admission 

We have conducted the first major NIHR funded, three year in-depth ethnographic investigation across England and Wales that examines the care people living with dementia receive when they are admitted to hospitals with another acute condition. The report describes a ward landscape of dehumanization, staff burnout and a setting that does not meet the needs of people living with dementia.

Clear recommendations from our study suggest stark changes to ward organization, and evidence-based interventions and training are required to improve the ways in which care is delivered at each bedside, are required if the NHS is to respond to the care needs of this growing patient population. Nurses and healthcare assistants who are on the frontline of providing crucial care to people with dementia need additional support.

We identified that the requirements of targets, risk assessments, and the strict ward routines and timetables of bedside care are currently dominating the everyday work of ward staff. This prevents them from delivering the bedside care that people living with dementia require. The fallout from this is a self-perpetuating cycle of anxiety for patients living with dementia, the consequences of which are also having a significant emotional toll on staff.

The recommendations from our research include no-cost and low-cost solutions that we believe can be integrated into existing ward organization and nursing care at the bedside.


Overview of results

Importantly we identified high levels of resistance to care amongst people living with dementia. At some point during their admission, every person observed during the investigation resisted care. Resistance originated from difficulties they had in communicating their needs, anxiety and disorientation. Indications suggest that these responses came from the ways care was organized and delivered at their bedside.

We found that ward staff are in danger of interpreting resistance to care as a sign that the person lacks capacity to make decisions, with the dementia diagnosis overshadowing and dominating responses and care. This has significant impacts on decisions relating to treatment and discharge pathways.

The report has identified one of the key ward responses to resistance to care was containment and restraint of people living with dementia – in place of best-practice recommendations for person-centred care and the need for frail and elderly patients to be allowed to move around to facilitate rehabilitation. Leaving the bed or bedside was viewed as a danger and a risk to the individual and in response, ward staff focused on keeping the person in the bed or sitting in the bedside chair. This had consequences for the person and their potential for rehabilitation.

Observations revealed the practice of restricting patients within the bed by raising the side rails or tucking sheets in tightly to contain people within the bed. Patients sitting in chairs were restrained in place by using mobile tray tables, unreachable walking frames and chair alarms to discourage movement. In addition, continence care (particularly full continence pads, and using bed pans, and commodes at the bedside), medication and sedation, and tightly secured medical equipment were also used to limited or restrained movement from the bedside.

Bureaucratic mechanisms of ‘specialing’ a patient or receiving a Deprivation of Liberty application (in the UK, this is an application of ‘deprivation of liberty’ to protect a vulnerable person who is judged to lack the capacity to consent to the care or treatment they need) were also in widespread use. This safeguarding regulation is designed to protect patients, but under stressful conditions could become used as a means of confining or controlling a person living with dementia.

The study has identified that although ward organization was focused on these strategies in response to resistance, to keep people safe, and to minimize risk of falls, the results appeared to trigger resistance and high levels of anxiety in people living with dementia during their admission.
Evidence also recorded a lack of opportunities for walking and movement to regain skills and independence within wards. These approaches are creating damaging cycles of stress for ward nurses, health care staff, patients and families.

Download the full report here.


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