4. Transforming specialist dementia care
Based on the evidence presented in this report, there is an urgent need for widespread redesign of specialist dementia hospital provision across Scotland. This includes the transition of most patients to the community, so they can be cared for in more appropriate settings to enhance their quality of life.
The decommissioning and re-design process can be delivered as a one-time, transformational change. This will require NHS Boards and Integration Joint Boards to review their community provision and capacity; making investments as required to provide the specialist support for those providing care in the community [x] . Moving forward, the Alzheimer Scotland Advanced Dementia Practice Model (2015) provides an approach to ensure that people with dementia are supported within the community.
Our vision is that the modern specialist dementia unit provides a centre of excellence to deliver quality treat and care for the small number of people with dementia who will have a clinical need to be in hospital. This will provide a highly skilled practice area and make it an attractive specialism for ambitious and talented practitioners to deliver therapeutic interventions.
4.2 Collaborative approach of the review
This vision was made possible by the overwhelming enthusiasm of staff working in this area in welcoming the Alzheimer Scotland National Dementia Nurse Consultant to visit their unit and sharing their practice. It 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, the Chief Nursing Officer's Directorate, Commitment 11 Excellence in Specialist Dementia Care Group of the National Dementia Strategy, and the Mental Welfare Commission.
4.3 Transformational change: decommissioning and re-investment
The review carried out by the Alzheimer Scotland Dementia Nurse Consultant identified that most patients did not have a clinical need to be in hospital and could be cared for in a community setting. The modest estimation of the proportion of people with dementia who do not have a clinical need to remain in hospital is 60 percent [y] .
This estimate is based on extensive consultation by the Alzheimer Scotland National Dementia Nurse Consultant with the multi-disciplinary professional teams and managers across the 63 units included in the review. The Alzheimer Scotland Dementia Nurse Consultant is also aware of work done by some NHS Boards in this area to assess the needs of patients to remain within these units. Whilst this work is not within the public domain, it is the understanding of the Alzheimer Scotland Dementia Nurse Consultant that this work is consistent with the evidence collected throughout the review.
There is also an urgent need for a widespread redesign of specialist dementia hospital provision across Scotland for the estimated 40 percent of people who have a clinical need to be cared for in these environments. This is essential to ensure access to multi- disciplinary professional specialists, provide an environment that supports person-centred care and deliver the required highly skilled therapeutic care and treatment.
It is not possible to provide a precise number of people with dementia in specialist dementia hospital units [z] . The most recent figure available is that of 1,886 NHS Old Age Psychiatry beds for people with dementia in 2014 [aa] . This number will have reduced in light of the redesign that has taken place since that time. For the purposes of this report, we estimate a current figure of 1,400 beds.
Based on this figure, 840 people with dementia could be safely transitioned to the community with appropriate support, with 560 specialist dementia hospital beds required across Scotland. The estimated 560 people who need to be cared for in a specialist care unit is less than one percent of the estimated number of people with dementia [bb] . This is consistent with the estimate provided by Brodaty et al (2003) [cc] in the "seven-tiered model of management of behavioural and psychological symptoms of dementia". This would require 45 12-bedded specialist dementia units across Scotland for the estimated 560 people.
The average cost of providing a specialist dementia hospital bed is £2,520 per inpatient week [dd] . This equates to an annual cost of £183 million per year – £110 million of which is on the 60 percent of patients who do not have a clinical need to be in hospital. This £110 million per year could be re-invested in providing highly specialised dementia hospital care and supporting community provision, so that people with dementia are not admitted to hospital unnecessarily.
The potential savings can be demonstrated by using a current 30-bedded unit as an example. The current average cost for 30 patients is £3.9 million, based on the £2,520 average weekly cost. Implementing a 12-bedded unit with additional multi-disciplinary input will result in the weekly cost per patient rising – we have estimated this would rise to £3,500 per patient for this example, which would cost £2.2 million per year for 12 patients. If £1,000 cost per week followed each person being transitioned to the community, this would be an annual cost of approximately £936,000 per year. This indicative example shows a potential overall saving of £800,000 per year for the decommissioning and transformation of a 30-bedded unit
An average of 60 people with dementia per NHS Board can be safely transitioned to the community with the appropriate level of multi-disciplinary support for those providing day- to-day care. This varies across areas, from an estimated 22 in NHS Borders to 164 in NHS Greater Glasgow and Clyde [ee] . Similarly, the number of specialist hospital beds required across Scotland will vary according to population size and need. Again, this will vary from 15 in NHS Borders to 109 in NHS Greater Glasgow and Clyde [ff] .
The review by the Alzheimer Scotland Dementia Nurse Consultant took place between April 2015 and March 2016. We therefore recommend that NHS Boards re-assess the proportion of people with dementia that can be safely transitioned to more appropriate community settings as an initial task in the de-commissioning and transition process.
4.3.1 Transition to community and health board planning
An integrated and comprehensive approach is required to support people living with dementia in the community. A coordinated and planned approach is necessary to tackle the acute issues that can arise and enable the delivery of optimum care. Those providing day- to-day care [gg] require specialist support in responding to the complex issues that can arise in dementia. They have a need for advice and guidance on caring to support the reduction of unnecessary hospital admissions.
The decommissioning process will require NHS Boards and Integration Joint Boards to evaluate the level and capacity of community resources to facilitate safe transition. There will be a need to invest where the required multi-disciplinary specialist support is not sufficient to support care homes and people living at home. A proportion of the resources released from reducing the hospital population can be re-invested in building community capacity. The example under section 4.3 shows that there can be savings on current resources, even with £1,000 per week following each person being transitioned to the community.
The review by the Alzheimer Scotland Dementia Nurse Consultant found the financial implications to be part of the reluctance from families in transitioning the person to the community. There should be no financial penalty for families as part of the decommissioning process. The care and treatment of the person with dementia being transitioned as part of the decommissioning process should continue to be met by the NHS Board.
The appropriate legal documentation would be required to transition a person who does not have capacity to consent to the move to a community setting. Welfare power of attorney or guardianship may be held by a family member giving them specific relevant powers.
Where guardianship or power of attorney does not exist, the legal protection required to move a person who lacks capacity should be adhered to, which may delay transition on occasions. Moving forward, the process of seeking guardianship would be commenced when a person is admitted to the specialist dementia unit.
4.3.2 Supporting and involving families
The review by the Alzheimer Scotland National Dementia Nurse Consultant identified that the family may be anxious about the person being transitioned to a community setting. The circumstances that led to the person with dementia being admitted to hospital may have been a crisis; once the situation had stabilised, the family may continue to consider hospital to be the most appropriate environment. They may be unaware that there are more appropriate community environments that could provide a better quality of life for the person. It is important to engage closely with the family to work through any apprehension in a supportive manner to reach a resolution.
The family should be fully involved in the transition planning process, with their views listened to and concerns addressed. They should be assured that the ongoing bio- psychosocial needs of the person with dementia will be reviewed and met within the community setting. They should also be certain that there will be no financial penalty as a result of the transition to a community setting.
Where the person is moving to a care home, the family should have the opportunity to visit and meet with staff who will be providing care. There should be a room prepared and opportunity for the family to personalise it. It is likely that most people would be moving to a care home, but there may be occasions when the person is returning home. In these instances, close family members will have had a significant input into this decision.
Moving forward, the family would be part of the ongoing assessment process within the specialist dementia unit. They would be aware that the person's presentation and care needs had evolved over time and there would be an incremental approach to safe transition planning within the multi-disciplinary team. Furthermore, there would have been no expectation that the person would have remained in the unit beyond the intensive clinical need; a well-planned safe transition to the community would be the aim.
4.4 Specialist dementia care unit
The specialist dementia unit is designed to provide care and treatment to 12 people with dementia who have a clinical need to be in hospital and who are unable to be supported in a community setting, no matter the level of specialist support provided. The unit will deliver highly skilled care and treatment focused on the therapeutic relationship, delivered by a multi-disciplinary team responding to acute and intensive psychological conditions.
The multi-disciplinary team within the unit will have additional support from specialist practitioners, as well as voluntary and community organisations in providing holistic care and treatment in response to the physical, psychological and social needs of each patient.
4.4.1 Patient profiles
Guidance on the appropriateness of hospital care in this area is based on a single eligibility question "Can the individual's care needs be met in any setting other than hospital" (Scottish Government 2015) [hh] . The care, treatment and support of most people with dementia can be provided in settings other than a hospital - this includes continuing to live at home or in a care home. Whilst there will be fluctuations in a person's health and the pattern of declining cognitive and physical function is neither fixed nor predictable, care and treatment for most people can be provided in community settings.
There will be a small proportion of people with dementia at any one time who will require specialised hospital care because of acute psychological symptoms resulting from their dementia and the complex interplay of co-morbid mental health conditions, necessitating substantial health care input. This requirement for specialist hospital care is not condition specific. It requires a holistic assessment of the individual, based on the person's overall needs and presentation.
People requiring specialised hospital care are likely to be in the advanced phase of dementia, as determined by the complexity and severity of symptoms. In addition to this, underlying health is a key factor and the influence of co-morbid mental health illness may result in a person with moderate dementia being admitted to the unit.
This group will experience severe behavioural and psychiatric symptoms. This will relate to people with enduring mental health conditions such as chronic schizophrenia, psychosis and severe depression with suicidality. It will also include people who demonstrate extreme behaviours that are harmful to themselves and others, including physical violence. The level of risk involved can require three people to provide care and support at any one time.
The specialised and multi-disciplinary professional approach within the unit will provide the care and treatment required to improve or stabilise the medical condition over a period of time, which may be around 18 months for many patients. The person will then be safely transitioned, once their condition has stabilised for a sufficient period of time and presentation has changed so that it is possible for care to be provided in a community setting.
4.4.2 Multi-disciplinary assessment
Many people being admitted to the specialist care unit will have an existing care plan, as they may be transferred from an assessment unit or have been receiving intensive support in a community setting. This may include a detailed formulation plan given the presence of psychological symptoms.
The initial step will be for the multi-disciplinary team to review any existing plan and identify where changes or additions should be made. This may include bringing in additional specialist practitioner/s to review a particular aspect of a patient's presentation.
Each specialist practitioner will conduct their individual assessment of the patient's presentation and needs. They will then take part in the multi-disciplinary review for each patient.
Ongoing regular review will then be required on a weekly basis with the multi-disciplinary team in evaluating care, managing medication and making appropriate changes to the care plan of each patient.
Whilst the person with dementia will be admitted to the specialist care unit as a result of severe psychological symptoms, they will also be experiencing a range of physical health care problems. In addition to this, there will be a need for social stimulation and meaningful occupation. The range of physical, psychological and social issues will require a bio-psychosocial approach to assessment and care planning in understanding and responding to individual experience.
The range of assessment tools utilised by the multi-disciplinary team in their evaluation of the individual's needs should be based on providing a holistic, person-centred approach. This would also include formulation such as the Newcastle Model (James 2011) [ii] in using a bio-psychosocial approach to understand the potential causes of psychological distress.
Additional tools would be utilised in the assessment and responses to depression, anxiety and medication review.
Dementia Care Mapping (Bradford University) [jj] provides a structured action cycle approach to assessing and reviewing the ongoing needs of the unit and individual patients. This includes person-centred planning, staff training needs and monitoring and implementing improvements to care.
4.4.3 Multi-professional care and treatment
The table below outlines the core group of health and social care specialists who will be located within the unit on a full-time or part-time basis.
Table 1: Specialist dementia care unit multi-disciplinary team
|Registered Mental Health Nurses||Directly involved in all care and treatment of each patient. Direct advanced statements and anticipatory care planning.|
|Registered General Nurses||To respond to and treat physical health care needs.|
|Clinical Support Workers||Deliver person-centred care under the direction of the nurse professionals.|
|Nurse Consultant||Provide expert advice in dementia care and treatment. Provide supervision of nursing within unit.|
|Advanced Nurse Practitioner||Support the mental health nursing and provide medication input|
|Consultant Psychologist||Assessment and prescribing of individualised interventions, formulation plans and neuropsychiatric assessment and treatment.|
|Consultant Psychiatrist||Formal diagnosis of dementia and other mental health illness. Involvement in the management and ongoing review of care and treatment.|
|Specialist Registrar Old Age Psychiatry||Substantive time on the ward and oversee care and treatment in deputising for Consultant Psychiatrist|
|Junior Doctor||Assigned to unit as part of training to develop understanding of specialism – provide support for physical health.|
|Occupational Therapist||Work with the person to develop and maintain a routine of everyday activities that creates a sense of purpose and supports a good quality of life. They can advise on changes to the everyday environment and equipment and adaptions.|
|Physiotherapist||Help restore movement and function through exercise, manual therapy, education and advice. Physiotherapy uses physical approaches to promote, maintain and restore physical, psychological and social well-being.|
|Speech and Language Therapist||Assess, diagnose and manage a range of communication and swallowing needs. The role also encompasses environmental adaptations to support communication, eating and drinking.|
|Dietitian||Assess, diagnose and treat diet and nutrition problems using the most up-to-date public health and scientific research on food, health and disease, which they translate into practical guidance to enable people to make appropriate food choices.|
|Activities Coordinator||Develop person-centred care planning for activities of interest delivered individually and as part of group work.|
|Mental Health Social Worker||Carry out needs assessment, pre-discharge and discharge planning and community care assessment.|
|Pharmacist||Assist in the review and management of medication.|
Additional specialist health care support
There will also be a need to access a wider range of specialist practitioners in response to the specific requirements and wellbeing of each patient. This will be determined by the assessed bio-psychosocial needs of each individual patient. It will include specialist consultants, such as a geriatrician for complex physical conditions and a cardiologist for heart and vascular health.
Additional allied health professional support will be important, including podiatry to help people stay mobile and independent, and arts therapies delivering highly specialist psychological therapies for difficulty in communication and expressing emotions verbally.
Patients may reach end-of-life in the specialist dementia care unit because of a co-morbid condition such as cancer. Access to palliative care specialists will be key to managing pain and other distressing symptoms experienced at end-of-life.
Social and community connections
It will be important to provide social stimulation and meaningful occupation, so that people remain connected and engaged. This includes supporting continued involvement in the person's existing hobbies, interests and spiritual practices. This will involve utilising connections with external agencies, voluntary organisations and community networks. It will include patients being supported to take part in activities outwith the hospital and community resources coming into the unit to provide social engagement.
The activities coordinator will work with the person and those closest to them to identify opportunities to link with supports within the community. The activities coordinator will also develop person-centred care planning for activities of interest delivered individually and as part of group work.
4.4.4 Staff quota
The table below outlines the staffing level within the specialist dementia care unit. This will be the basic level of cover provided by the multi-disciplinary team. This will be under continual review according to the needs of patients and may be increased for particular needs, such as those requiring continuous observation of a patient for their wellbeing and the safety of others.
The multi-disciplinary team is split into the different staff groups and disciplines. Total nursing and clinical care workers equates to 29.8 whole time equivalent staff. An additional 5.4 whole time equivalents will include consultant psychologist, consultant psychiatrist, junior doctor, allied health professionals and additional practitioners including nurse consultant, advanced nurse practitioner, pharmacy and social worker with Mental Health Officer status. The unit should also take students of each profession in order to make this an attractive career choice for the future workforce.
Table 2: Specialist dementia unit staffing for seven-day week
|Practitioner||Level of staffing full time equivalent||Grade|
|Nursing and clinical care workers|
|Senior Charge Nurse||1.0||Band 7|
|Charge Nurses||3.0||Band 6|
|Registered Mental Health and General Nurses||15.4||Band 5|
|Clinical Support Workers||10.4||Band 3|
|Additional nursing staff|
|Nurse Consultant||0.1||Band 8B|
|Advanced Nurse Practitioner||0.4||Band 7|
|Specialist Registrar Old Age Psychiatry||0.5|
|Allied health professionals|
|Occupational Therapist||0.5||Band 7|
|Speech and Language Therapist||0.3||Band 6|
|Dietitian Additional practitioner||0.3||Band 6|
|Social Worker with Mental Health Officer status||0.5|
4.4.5 Knowledge and understanding of dementia
A sound understanding of dementia is essential for all those providing care and treatment within the specialist dementia unit. The Promoting Excellence Framework (2011) provides a structured approach to understanding the level of knowledge and skill required by staff in health and social care services to provide human rights based care and support in accordance with the Charter of Rights (2009) [kk] .
The level of knowledge and skill required by each practitioner will be determined by their role and level of responsibility within the multi-disciplinary team. The Promoting Excellence Framework provides four levels [ll] of knowledge and skills that staff require to support people with dementia and their family at different phases of the illness [mm] . It also provides "key quality of life indicators" that staff should be supporting people to achieve.
As a minimum, all ancillary and non-clinical staff supporting the units should have the knowledge and skills set out in the "Informed" level of Promoting Excellence.
As a minimum, all clinical staff should have the knowledge and skills set out in the "Skilled" level of Promoting Excellence, inclusive of clinical support workers and wider team members including roles such as volunteers.
All professionally registered staff including medical, clinical psychology, nursing and allied health professionals, will as a minimum have the knowledge and skills set out at the "Enhanced" level of Promoting Excellence.
Specialist dementia units should also receive multi-disciplinary support from practitioners operating at the "Expertise" level of Promoting Excellence – noting that this level of practice becomes role and discipline specific. These practitioners should include clinical psychologist, nurse consultant, advanced nurse practitioner, psychiatrist, activity coordinator and a range of allied health professionals.
In addition, there will be a minimum of one practitioner who has completed the NHS Education for Scotland intensive capacity and capability building Dementia Specialist Improvement Leads programme ( DSILS). There should be strategic and organisational support and leadership to maximise the role of staff who have completed the training to enable DSILS', to cascade enhanced and expertise education and training to support change and improvement.
4.4.6 Working with families
Close family members are partners in care and it is essential that these key relationships are recognised and respected. Staff within the unit should be aware of the powers held by the family member/s, such as power of attorney or guardianship. The family carers have their own rights in addition to those assumed when acting for the person with dementia to "full participation in care needs assessment, planning, deciding and arranging care, support and treatment, including advanced decision making" (Charter of Rights 2009).
The family member/s should be encouraged to be active participants in the care of the person with dementia, including treatment discussions and being invited to multi-disciplinary team reviews. This should be ongoing throughout the person with dementia's stay in the unit and during discharge planning. Whilst attending the multi-disciplinary team review will be appropriate for some, others will be more comfortable in having more informal discussions with those providing care and for their views to be listened to and taken into account in this way. As the family will have been integral to care planning throughout the stay in the unit, the discussion around possible transition will occur gradually and not be presented suddenly.
Visiting times should be flexible, with the family member/s encouraged to remain as long as they wish. They should be encouraged and supported to continue to make the contribution to care that is important to them and of which they are capable. Family members should be made aware of the possible financial support to enable them to visit the unit, depending on their personal circumstances.
4.4.7 Environment and physical space
It is essential that the specialist dementia unit is a purpose built physical environment.
It is not appropriate or acceptable for this highly specialised care and treatment to be provided in an adapted building. The specialist built environment provides the opportunity to maximise the therapeutic potential of the space and supports the comfort, safety and activity of patients. It can also act to reduce the occurrence of distress.
Design features that respond to the experience of the illness as well as age-related impairments, can support person-centred care. It provides an enhanced working environment for staff to deliver person-centred care and a welcoming and supportive environment for people visiting the unit, who may spend a large part of their time with their family member, supporting their care. Some important features in dementia design are outlined in Table 3 below.
Table 3: Some examples of key design features
|Built environment||Purpose built environment that maximises therapeutic potential through layout, design and key features.|
|Sound||Absorbance from ceilings, floors, window covering and soft furnishing to support audible communication. Quiet ambience with noise minimised.|
|Corridors||All corridors lead to meaningful places, with endings avoided or made into an interesting feature for engagement and activity.|
|Signage||Clear signage to help wayfinding for everybody, with pictures and graphics in addition to words.|
|Bedrooms||Individual en-suite facilities, room recognisable with easy visibility of bed and personal items on display.|
|Meaningful occupation||Facilities that support engagement in occupation, activity and social stimulation.|
|Outside space||Access to outside space during the day from communal areas.|
|Safety||Environment to minimise risk of self-harm and injury.|
The specialist dementia unit requires an innovative approach to design that delivers maximum therapeutic potential. NHS National Procurement is well positioned to commission the design of a blueprint for the optimal environment to support specialised dementia hospital care. Through this competitive process, an innovative and creative design team can be appointed to create a blueprint that can be used by all NHS Boards to build the specialist dementia unit that provides a living and working environment and supports maximum therapeutic potential and enhances the full potential of each individual patient.