The context for longer-term hospital care for people with progressed-stage dementia is complex. In line with current policy, continuing care for people with dementia is provided in local communities as close to home as possible. With the growth in demand for services as the incidence of dementia rises, much of the care will be delivered in care homes. While hospital units and wards should be considered primarily as providers of short-term care, some deliver longer-term services to people who will live out the last days of their lives in these settings.
With the introduction of post-diagnostic support and Alzheimer Scotland's Five- and Eight-pillars Models, dementia care in Scotland is being transformed. People being diagnosed today are likely to have a different future to those presently at a more advanced stage, but it will take time for the benefits to be fully realised. In the meantime, NHS mental health services for people with dementia must strive to meet the standards that have been set.
Commitment 11 of the National Dementia Strategy
Commitment 11 of Scotland's National Dementia Strategy 2013-2016 relates to extending the work in improving care for people with dementia in acute hospitals to other hospital settings. This includes mental health and community hospitals to which people are admitted for short periods of assessment and treatment not necessarily related to dementia, but whose needs are complex as a result of co-morbidity.
Commitment 11 also includes specialist mental health dementia care settings, and these services have been identified as the first priority. People with progressed-stage dementia commonly have complex physical and psychological needs. As such, they require highly skilled interventions from staff who have undertaken special training and whose specialist role is recognised, supported and nurtured.
Mental Welfare Commission report
The Mental Welfare Commission (MWC) report of care in these wards, Dignity and Respect: dementia continuing care visits, published in June 2014, shows that the level and quality of care and support provided is in many cases falling short of the expected standards.
The MWC carried out a series of visits to 52 units in 12 NHS boards in Scotland during 2013. While examples of good practice were found, concerns were raised in relation to elements considered essential in specialist dementia care, such as application of the Adults with Incapacity (Scotland) Act 2000 and the management of stressed and distressed behaviours.
Summarising, the report states:
While we found that many people were receiving good quality care in a suitable environment, we also found units where the care and/or the environment were poor, and where the rights and dignity of people with dementia were not adequately respected. We were disappointed that too many people with dementia were not receiving care which met acceptable standards.
It is clear that people with dementia have the right to receive person-centred, safe and effective high-quality care at all stages of their illness and in all care settings - including, of course, the settings described in the MWC report. The Standards of Care for Dementia in Scotland, published in 2011, prescribes that everyone has a human right to this level and quality of care.
The self-assessment and reporting process
A process was developed to support NHS boards to undertake a one-off baseline self-assessment of current practices in all specialist dementia care settings to meet the needs of Commitment 11 and address the issues raised in the MWC report. To minimise duplication, a composite self-assessment form based on the Healthcare Improvement Scotland Older People Acute Hospital (OPAH) inspection self-assessment method was used, with some additions to reflect specific issues in the MWC report.
The self-assessment was carried out between September 2014 and March 2015. It aimed to identify current good practice but also enable NHS boards to identify where improvements could be made. Eleven main areas, or outcomes, were covered:
1. Legal matters and safeguards
2. Person-centred care
3. End-of-life care
4. Medication, non-pharmacological support and managing stressed and distressed behaviours
5. Care environment
6. Safe and effective care - food, fluid and nutrition
7. Safe and effective care - pressure area care/continence care
8. Safe and effective care - falls care
9. Workforce planning and development
11. Carer involvement.
Each board was expected to develop an improvement action plan based on the priorities highlighted by their self-assessment. The collated self-assessments are being used by the Scottish Government and others to identify national priorities for improvement that will be taken forward under the auspices of the Quality and Excellence in Specialist Dementia Care (QESDC) programme.
All NHS boards will be required to undertake regular reporting based on the national and local priorities. The reporting will be monitored through the Commitment 11 Implementation and Monitoring Group, Scottish Government NHS board performance reports, NHS board local delivery plan reporting and annual NHS board reviews. Regular summaries and an annual report will be provided to the Cabinet Secretary for Health, Wellbeing and Sport and the Minister for Sport, Health Improvement and Mental Health.
The aim of this report is to summarise the self-assessment returns from NHS boards to identify common areas of practice.
The focus is less on what distinguishes the boards one from another, although examples of practice from named boards are cited throughout, and more on what unites them.
The self-assessments confirm a wide range of initiatives across the identified topic areas that all or most boards seem to have in place - practices like protected mealtimes, actions around Do Not Attempt Cardiopulmonary Resuscitation orders, developing life-story and "Getting to Know Me" documents, promoting carer support and involvement, providing appropriate training for staff, and tailoring ward designs through appropriate signage and access to outdoor spaces. It is these kinds of initiatives and practices that the report seeks to highlight.
Email: Ian Roxburgh