Transforming specialist dementia hospital care: independent report

Executive summary

Introduction:

• This report sets out a model of specialist hospital care for people with dementia who have intensive and complex clinical care needs that require high level expert care.
• Specialist dementia hospital care is required for people with dementia who have an acute psychological presentation as a result of dementia or co-morbid mental health illness. The clinical needs of this group can only be met in a hospital environment.
• Whilst a psychological presentation may necessitate being admitted to hospital, the person will also have additional physical, emotional and social care needs. This requires a highly skilled multi-disciplinary workforce that can deliver therapeutic interventions, care and treatment.
• It also provides an approach to the safe transition of people who do not have a clinical need to remain in hospital and can be cared for in more homely settings in the community, with the appropriate level of multi-disciplinary professional input to support those providing day-to-day care.
• The findings and recommendations of this report were made possible by the overwhelming enthusiasm of staff working in this area to welcome the Alzheimer Scotland National Dementia Nurse Consultant to visit their unit and share their practice. This included staff within the specialist dementia units, mental health leads for quality excellence in specialist dementia care, executive directors of nursing and allied health professionals, consultant psychiatrists and psychologists, pharmacology and social work.
• This collaborative approach also included people with dementia and their families, Chief Nursing Officer's Directorate, Commitment 11 Excellence in Specialist Dementia Care Group of the National Dementia Strategy and the Mental Welfare Commission.

Background:

• The Mental Welfare Commission's ( MWC 2014) review of dementia continuing care units identified serious concerns with quality of care, environments, access to multi- disciplinary professionals and adherence to legal requirements for providing care.
• A roundtable discussion ^[a] was hosted by Alzheimer Scotland in 2014 following on from the above report to develop a better understanding of the issues and challenges and identify what could be done to remedy these.
• The key outcome of this roundtable was the appointment of an Alzheimer Scotland National Dementia Nurse Consultant to undertake a review of NHS specialist dementia care environments. This post was jointly funded by Alzheimer Scotland and the Scottish Government.
• Ten NHS Boards were included in this review, with 63 individual specialist care environments visited from a total of 92 with the purpose of 1) evaluating the quality and appropriateness of specialist hospital care in dementia and 2) developing an understanding of the issues around transition and discharge from hospital.
• During these visits staff demonstrated how they were delivering person-centred care within challenging circumstances and environments. These challenges included unsuitable buildings, design and layout that hindered the delivery of person-centred care, lack of access to multi-disciplinary professionals and the needs of patients ranging from acute psychological symptoms to end-of-life care.
• The Alzheimer Scotland National Dementia Nurse Consultant also brought her own in- depth understanding of the context of these environments and the needs of people who require specialist dementia hospital care. This specialist knowledge and understanding, combined with the extensive consultation enabled the Nurse Consultant to provide the recommendations within this report.

Issues with current provision:

• The Alzheimer Scotland National Dementia Nurse Consultant found:
  • Specialist dementia wards are frequently located in environments that do not support person-centred care and can increase the distress of the person with dementia and their family.
  • There is a lack of access to the multi-disciplinary professionals required to support the complex care required in dementia.
  • There is difficulty with transition, resulting in the largest proportion of patients in the specialist dementia wards being those who do not have a clinical need to be in hospital.
  • This makes it difficult to provide appropriate care for the current wide range of differing needs. It also means that resources are not being targeted effectively.
  • Staff within specialist care are committed to providing good quality care, but are hindered by the current obstacles.
• There is a lack of integration between these specialist hospital environments and the wider health and social care systems.
• This results in specialist dementia hospital units sitting in isolation, without the same focus on discharge to more appropriate care environments that is the case with acute hospitals.
• This often results in the window of opportunity being missed for safe transition to a more appropriate community setting to enhance quality of life.
• Most people with dementia can be cared for in the community throughout the illness. This requires a multi-disciplinary coordinated and planned approach to support those providing day-to-day care.
• There will be a small number of people with dementia who have acute clinical care needs that require specialist hospital care for a period of time.
• It is estimated that up to one percent of people with dementia will require management in a specialist dementia hospital environment at any one time ^[b] . This will result from severe psychological symptoms of dementia or the combined influence of a co-morbid mental health condition.

Moving forward:

• This report sets out a model of modern specialist hospital units based on quality of care for people with dementia who have intensive and complex clinical care needs and require high level expert care.
• It also provides an approach to build community capacity to support the safe transition of those who do not have a clinical need to remain in specialist hospitals and can be cared for in more homely settings in the community.
• Going forward, the Advanced Dementia Practice Model (Alzheimer Scotland 2015) provides the integrated and comprehensive evidence-based approach to support people in the community and ensure that people with dementia do not remain in hospital unnecessarily.
• Based on the evidence presented in this report, there is an urgent need for widespread redesign of specialist dementia hospital provision across Scotland. This will enable current resources to be used more effectively.
• The decommissioning and re-design process can be delivered as a one-time transformational change.

Recommendations:

• That specialist NHS dementia care is modernised, providing high quality, human rights- based care, specifically for individuals who cannot be cared for in the community.
• Integration Joint Boards develop a transition plan and a local engagement strategy with their partners, including NHS Boards and people living with dementia, for any necessary de-commissioning process and re-investment in specialist dementia units and to develop further community capacity in health and social care services.
• That the Scottish Dementia Working Group and National Dementia Carers Action Network provide the representative groups for this local engagement.
• Integration Joint Boards and NHS Boards assess the proportion of people with dementia that can be safely transitioned to more appropriate community settings.
• The Alzheimer Scotland National Dementia Nurse Consultant provides expert guidance at both a national and local level.
• Integration Joint Boards and NHS Boards build strong and strategic local engagement on:
  • Any necessary de-commissioning and re-directing of resources to the development of specialist dementia hospital units and
  • building further community health and social care services.
• NHS National Procurement to commission the design of a blueprint for a specialist dementia unit that can be implemented by each NHS Board.
• There should be no financial detriment for families as part of the decommissioning process, with the financial cost of the care and treatment of the person with dementia being transitioned to the community continuing to be met by the NHS Board.
• The legal status of patients being transitioned to the community is reviewed and the appropriate legal documentation put in place.
• The creation of modern specialist dementia units that will provide centres of excellence to treat the small number of people with dementia who have a clinical need to be in hospital.
  The estimated 45 ^[c] specialist dementia units required across Scotland will provide a highly skilled practice area and make it an attractive specialism for ambitious and talented practitioners to deliver highly skilled therapeutic interventions.
  Promoting Excellence Framework the foundation for evidence based care for all practitioners. Leaders and senior practitioners ensuring that everyone working within the unit are trained at the appropriate level to ensure a high quality therapeutic approach.
  They will be underpinned and supported by the Charter of Rights for People with Dementia and their Carers in Scotland, the Promoting Excellence Framework, the AHP Framework Connecting People, Connecting Support and the Standards of Care for Dementia in Scotland.
• The timeframe for this process will extend beyond the end-point of Scotland's 2017- 2020 National Dementia Strategy