3. Current approach to specialist dementia hospital care
This section provides an understanding of current approaches to specialist hospital care in dementia. Evidence presented comes from the extensive and in-depth review by the Alzheimer Scotland National Dementia Nurse Consultant [u] . This review included consultation with a wide range of key stakeholders such as practitioners and people living with dementia. It outlines the key problems in the quality and appropriateness of provision. It also highlights that many people do not have a clinical need to be in hospital, but that challenges with transitioning from these environments means that the number of people remaining in hospital is much higher than necessary.
A synopsis of the findings of the Mental Welfare Commission's reports [v] in specialist dementia care environments is provided. The good practice examples from the review by the Alzheimer Scotland National Dementia Nurse Consultant are then presented along with an understanding of some of the improvements since that time.
3.2 Findings of review by the Alzheimer Scotland National Dementia Nurse Consultant
3.2.1 Hospital population
Admission to assessment units was often not because of clinical need to be in hospital. It could broadly be defined as relating to a lack of appropriate care and support in the community. This included the lack of an appropriate care plan for the person to remain in their current place of residence, and distress in dementia not being adequately supported by specialists in the community. The range of needs within specialist units and transition units varied widely from psychological symptoms of dementia and co-morbid mental health illness to end-of-life. Occupancy levels varied across the NHS Boards. Low occupancy was noted in three Boards with occupancy levels around 70 percent.
3.2.2 Workforce skills and knowledge and access to multi-disciplinary professionals
The skill mix and ratio of professional staff in these environments was lower than that of all other mental health areas. In most areas there was a lower ratio of registered mental health nurses to clinical support staff. A small number of NHS Boards had higher ratios of professional staff, with 55 to 60 percent registered mental health nurses.
Access to multi-disciplinary professionals in assessment units was at a higher level compared with specialist dementia units. However, the level varied between NHS Boards. Only two wards had dedicated social worker time, with all others having a referral system. Most of the specialist and transition units for people with complex needs associated with advanced dementia had no access to the multi-disciplinary professional team including psychology, pharmacy and allied health professionals.
Half of the assessment units had access to allied health professionals and there was very limited access to pharmacy and psychology. The specialist and transition units had virtually no access to these professionals – access to pharmacy was minimal and they were not participating in medication management or multi-disciplinary reviews. Access to other professionals could be available through a referral approach, but length of waiting time was an issue. Due to increased referrals from community teams, very few people with dementia in the specialist and transition units were supported by the psychological service.
The cost of beds varied widely. Higher costs did not equate to quality of care and access to a greater number of specialists compared with the less costly beds. Whilst many of the specialist beds are in mental health services, some are managed within community hospitals and others within primary care, where there is limited access to specialist dementia professionals. Two Boards had transferred the care and treatment of patients with dementia to a specialist unit in England because of the lack of a hospital environment that could provide specialist care within Scotland.
Older facilities were in use in many areas which required significant investment for upgrade and maintenance. Specialist dementia units continue to be located on upper floors with no easy access to outdoor areas. These can be old, institutional environments in locations that are difficult for families to visit using public transport.
In many cases the built environment presented challenges for staff in providing person- centred quality care and added to the distress of patients and families. There was a lack of privacy, with bed and toilet areas being shared by up to six people with no personal shower or wash areas.
Purpose-built dementia units had been developed in some areas, with others to be completed by 2019. At the time of the review, four NHS Boards were implementing a bed remodelling plan, driven by low occupancy and units being housed in outdated buildings.
The length of stay within assessment units was an average of eight to 12 weeks. However, it could be up to two years in some instances and increased significantly when there were legal issues such as lack of specific relevant powers through power of attorney or guardianship. Discharge from these environments was often to a care home or NHS specialist bed either in hospital or in a contracted-out location. Delays in discharge were attributed to lack of funding for a care package and the availability of appropriate care settings within the community.
The length of stay within specialist and transition units ranged from one year to 15 years, with an average of four and a half years. The specialist dementia units exist in isolation and are disconnected from wider health and social care services commissioned by Integration
Joint Boards. Challenges to discharge included social work considering it to be a low priority as the person was in a place of safety. Families were apprehensive about care being provided outwith the specialist hospital environment and there was a lack of knowledge about alternative appropriate accommodation and support. Failed previous discharge to a care home was a common reason why people remained in NHS care.
3.3 Good practice examples and changes implemented since the time of review
There was evidence of good practice at the time of the initial review and follow-up visits by the Alzheimer Scotland National Dementia Nurse Consultant. It was evident throughout the review that staff were committed to providing a high standard of care. However, they were often frustrated and hindered by the issues outlined in the previous section.
The Promoting Excellence Framework (2011) had been implemented in every NHS Board visited. Most assessment units held reviews once or twice weekly, with families invited as appropriate.
Good practice in pre-discharge was noted in two Boards. In one, hospital staff and family would visit the care home to offer support to care home staff. The other had consultant- led clinics within care homes which successfully reduced admissions to the ward with outreach working. Two Boards reported a significant reduction in admission where psychiatric liaison teams had been established to support the care homes in their areas.
At the time of the review, there had been a number of recent improvements, including an activity room and areas for family to use or stay overnight. Some units had activity coordinators, with volunteers and community groups providing support for activity and connection. Many of the units visited had activity programmes planned.
Although some units had excellent facilities and activity rooms, staff shortages and lack of time meant the majority were locked, with no therapeutic activity going on within the unit at the time of the visit. When activity was carried out it was provided by nurses, with few units having access to specialist allied health professionals.
3.4 Mental Welfare Commission reports
Around 30 Mental Welfare Commission reports on specialist dementia care environments were reviewed. The visits took place throughout 2016 and 2017 across NHS Board areas in Scotland. The issues identified by the Commission were consistent with the extensive review conducted by the Alzheimer Scotland National Dementia Nurse Consultant.
Reports noted recommendations from previous visits – this highlighted that improvements are being made in areas of concern previously raised by the Commission. However, significant issues remained across many of the environments recently visited.
Most frequently occurring was a failure to evidence person-centred care planning and lack of access to multi-disciplinary specialists. A need for meaningful activity and tailored or person centred activity for patients was also recognised in many areas. There were some instances of a failure to record documentation in relation to the relevant Acts [w] in the patient's file and to consult proxy decision makers and involve family members. Environmental concerns included overly clinical settings, unsuitable buildings and dignity and privacy being compromised.
3.5 Moving forward
This section has demonstrated that specialist dementia units 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. It has also shown a lack of access to the multi- disciplinary professionals required to support the complex care required in dementia.
There is a disconnection between these specialist services and the wider health and social care commissioned by Integration Joint Boards. This creates difficulties with transition and results in a significant proportion of patients in the specialist dementia wards having no 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.
The following section provides a model of specialist dementia care for those who have a clinical need to be in hospital. It also outlines an approach to the safe transitioning of the current group of people with dementia in specialist hospital environments who would be more suitably cared for in community settings.