Dementia care 'lacking', report finds

"Hospital staff 'lack skills to cope with dementia patients'," The Guardian has today reported. The newspaper says that the National Audit of Dementia has found that the care dementia patients receive is "impersonal" and that they "suffer boredom".

There are currently 750,000 people reported to have dementia in the UK, and it is estimated that there will be more than a million people with dementia in the UK by 2021. The report says that at any one time, up to a quarter of acute hospital beds are occupied by people over the age of 65 with dementia. The report says that people with dementia in hospital are more likely to belong to older age groups and more likely to need other mental and physical care.

What is the basis for these current reports?

The news stories have been prompted by the publication of the first National Audit of Dementia. The audit was set up in 2008 to look at the quality of care received by people with dementia in general hospitals, from their admission through to their discharge.

The main questions the audit wanted to answer were:

• What structures and resources do hospitals have in place to allow them to identify and meet the care needs of people with dementia?
• What evidence is there to show that people with dementia in the hospital have received an acceptable standard of care?

The report was produced through a collaboration of several professional and charitable bodies representing the main disciplines involved in dementia services: The Royal College of Psychiatrists; The British Geriatrics Society; The Royal College of Nursing; The Royal College of Physicians; The Royal College of General Practitioners; and The Alzheimer's Society. The audit was funded by the Healthcare Quality Improvement Partnership, and co-ordinated by the Royal College of Psychiatrists' Centre for Quality Improvement (CCQI).

Although some news sources have suggested that the audit obtained existing data on hospitals, it should be noted that the hospitals and staff themselves provided the data for the purposes of the research and actively took part in the audit.

How was the audit carried out?

First, a literature review was carried out to identify documents outlining the standards of care that have been recommended for people with dementia. This review looked at national reports and guidelines, publications issued by professional bodies, and reports and organisations representing patients and carers. A second review then identified key areas of concern for patients and their carers. Standards identified were classed as essential (type 1), expected (type 2) and aspirational (type 3).

Processes were then developed to collect information about key areas of interest from hospitals on whether they were meeting the recommended standards identified by the reviews. The audit was piloted in 2009 and then carried out nationally between March 2010 and April 2011.

Checklists and questionnaires were sent to hospital staff, and the hospitals carried out observations of care as it took place. Part of the observation focused on communication and interaction between hospital staff and the patient and their family.

This extensive audit had two parts, one at the level of the hospital as a whole, the other at the level of the ward. The hospital part of the audit included:

• a checklist to audit the hospital's organisational structures, including service structures, policies, care processes and key staff
• an audit of the case notes of a sample of 40 patients with dementia per hospital, to look at their admission, assessment, care planning and delivery, and discharge

More than 200 hospitals participated in this part of the audit.

The ward-based part of the audit included:

• a checklist to audit the ward's organisational structures, including staffing, support and ward-level processes
• a checklist for assessing the physical environment of the ward
• staff questionnaires about staff awareness of dementia and the support offered on the ward to patients with dementia
• a patient questionnaire to assess patients' overall perception of the quality of care
• a carer questionnaire to assess carers' experience of the support received from ward staff
• an observation of interactions between patients and staff to assess the quality of the care provided to people with dementia

What were the results?

Of the hospitals eligible for the audit, 89% submitted data, which meant that 99% of the trusts and health boards in England and Wales were included. Most hospitals collected data at both ward and hospital level.

The audit found that, in general, there was a low level of compliance with the recommended standards of care. Overall, the hospitals performed better on organisation level standards, meeting 48% of these standards (38/80 standards) on average (median). Hospitals met only 6% of case-note-based patient care standards on average (median). It should be noted that these standards were assessed based on recording aspects of a person's condition or care in their notes. It is possible that in some cases some aspects of care may have been carried out but not recorded.

None of the hospitals met all of the standards of care classed as "essential". The best hospital met 20/21 of the essential hospital organisational standards and 14/28 of the essential patient case-note-based standards.

There was a lot of variation between hospitals, for example, at different hospitals between 3% and 100% of patients received nutritional assessment (average 70% nationally). The audit also found that hospitals that met a large number of the hospital organisational standards did not necessarily meet a large number of the case-note-based patient care standards. The report says that this indicates that "the presence of a hospital policy or procedure is not a good marker of actual practice". Therefore, having hospital-level policy that a procedure should be carried out did not always mean that it was carried out.

The report goes on to break down the results in the different areas: governance, assessment, mental health and liaison psychiatry, nutrition, information and communication, staff training, staffing and staff support, physical ward environments, discharge planning and discharge, and the findings from the observation of care.

Some of the extensive findings include:

Governance (the processes and systems in place):

• 6% of hospitals had a care pathway in place for people with dementia at the time of audit and 44% of hospitals had a care pathway in development.

Assessment:

• 84% of hospital assessment guidelines and procedures included assessment of how well a person was functioning (for example in basic day-to-day activities), but only 26% of case notes reported that this was carried out.

Mental health and liaison psychiatry:

• 90% of hospitals had access to a liaison psychiatry service, and in most cases this service was provided by a team, rather than a single practitioner.
• Case note audit data showed that patients with dementia referred to liaison psychiatry were often not seen in a timely manner, with nearly a third of urgent referrals waiting for more than four days to be seen.
• There has been concern about inappropriate use of antipsychotics in people with dementia. In the audit, 28% of people with dementia were found to have received antipsychotic medication in hospital.
• 12% of people with dementia were newly prescribed this medication during the current admission to hospital. Reasons for prescription were not recorded in 18% of these cases.

Nutrition:

• 96% of hospitals had a procedure for multidisciplinary assessment that included nutritional assessment. However, only 70% of the case notes in the sample included this assessment, and only 63% of these case notes had a record of the patient's weight.

Information and communication:

• 40% of hospitals had a clear procedure for sharing information with families and only about half of hospitals were found to have guidelines for the involvement of families for discharge and support arrangements.
• 88% of wards had a system for communicating personal information about patients with dementia.
• 43% of the case notes had a section specifically for collecting information from a carer, friend or relative; and around 40% were organised so that information about the person's dementia and care and support needs could be found quickly.
• 24% of case notes contained information about factors that might cause distress to the person with dementia.
• 92% of wards could provide information on what to expect in hospital and almost all of the wards made patients and carers aware of the complaints procedure.
• 61% of wards said a responsible healthcare professional was identified to the family as a contact for help and information, but only 45% of staff reported that patients were allocated a named professional as a contact.

Staff training:

• Only 5% of hospitals had mandatory training in dementia awareness for all staff, and 23% had a training and knowledge strategy setting out the necessary skill development for staff caring for people with dementia.
• 32% of staff said they had sufficient training or learning and development in dementia care, including awareness training and skills-based training.

Staffing and staff support:

• There was variation across wards in staffing numbers and skill mix.
• 93% of wards had a system to ensure minimum staffing levels were in place. However, less than a third of staff considered staffing was sufficient to meet patient needs.

Physical ward environment:

• 56% of wards reported that patients with dementia were able to see a clock from their bed area, but only 5% reported that patients were able to see a calendar from their bed area. Clocks and calendars can help patients with orientation.
• 56% of wards reported that information (words and pictures) on signs was in clear contrast to the background, and 38% of wards reported that signs or maps were large, bold and distinctive.
• 15% of wards used colour schemes to help patients with dementia find their way around the ward.
• 59% of wards stated that personal items were not always situated where the patient could see them at all times.
• Flooring that might cause confusion for people with dementia, such as busy patterns or high-gloss surfaces, seemed to be avoided in most hospital wards.

Discharge planning and discharge:

• 94% of hospitals had a commitment to begin planning for discharge within the first 24 hours of admission, but about half of the case notes assessed suggested this planning had not taken place. It was not possible to specify a reason.
• 75% of case notes recorded that an assessment of the carer's current needs had taken place before discharge, and 80% of case notes showed evidence that the place of discharge and support needs had been discussed with the carer or a relative. These figures were described as "encouraging".

Observations of care:

• The overall finding was that care and communication was generally reactive and based on an organisationally set, task-driven routine rather than being person-focused, flexible and proactive. The report said that it was "apparent that there is considerable scope to develop and enhance person-centred care for people with dementia".
• There were periods of care-based activity interspersed with inactivity, leading to lack of attention, lack of stimulation and boredom for patients.
• The environment was often impersonal and not "dementia friendly", with excess noise at times, and a lack of orienting cues, dementia aids or areas for socialising.
• There was inconsistency in the quality of communication.
• The audit found "pockets" of positive, person-centred care in the practice of individual staff members, or as aspects of ward practice.

What did the audit conclude overall?

The report suggests that most hospitals have yet to consider and implement measures to address the impact hospitalisation has on people with dementia. It says that the findings support the National Institute for Health and Clinical Excellence's Dementia Quality Standard statement that "an integrated approach to provision of services is fundamental to the delivery of high quality care to people with dementia".

The extensive report makes a wide range of recommendations for the different groups providing and devising dementia care, including professional bodies, hospital chief executives and ward managers.

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