Transforming specialist dementia hospital care: independent report

2. People with dementia who need specialist hospital care

2.1 Introduction

This section will demonstrate that most people with dementia can continue to be cared for in the community throughout the illness. It will show that only a small proportion of people with dementia require specialist hospital care. As the number of people with dementia increases, recognising and responding to these factors will be of key importance in reshaping dementia hospital provision with the essential component of specialist community support to ensure resources are used efficiently.

2.2 People with dementia who will require specialist hospital care

The experience of dementia is unique to each individual and dependent on factors relating to underlying health, personality, biography and social context. As dementia progresses, the physical nature of the illness becomes more to the fore – the influence of social and psychological aspects will also continue to be prominent.

People will often have co-morbid physical or mental health conditions that will combine with dementia in a complex way. The possible range of physical, psychological and social issues in dementia requires a bio-psychosocial holistic approach in providing appropriate care and treatment for the individual.

Health care practitioners will have a key role in responding to the increasing physical nature of advancing dementia, the impact of co-morbid conditions and supporting psychological wellbeing. This specialist support can be provided in the person's current place of residence ^[q] for most people with advanced dementia. Section 2.4 outlines how people can continue to be supported in the community to avoid unnecessary hospital admissions.

There will be a small proportion of people who will require specialist dementia hospital care and treatment. This group will experience very severe and persistent psychological distress and behaviours that would be too challenging to be managed in mainstream settings, irrespective of how much specialist support is provided.

The types of issues include aggression and physical violence, self-harm, high risk to self and/or others and ongoing extreme disinhibited behaviours, with lack of recognition of inappropriateness. They will often be physically mobile and possibly younger. It also includes people with dementia who have acute mental health conditions such as psychosis, schizophrenia and severe depression with suicidality.

This group will also have complex physical health care needs, along with the requirement for meaningful occupation and social stimulation. This requires a multi-disciplinary professional approach in addition to the nursing and specialist clinical care support who will provide day-to-day caring.

Brodaty et al (2003) ^[r] provide a "seven-tiered model of management of behavioural and psychological symptoms of dementia". They estimate that up to one percent of people will be within the highest tiers and require management in a psychogeriatric or neuro- behavioural unit. This will include people with acute psychiatric illness and severe behavioural problems complicating their dementia.

The intensity of experience is likely to continue for a relatively short period of time until the presentation changes. This may be ongoing for a period of around 18 months and will diminish as the illness progresses and physical robustness reduces. The person can then be safely transitioned to being cared for in a community setting, once this clinical need to remain in hospital no longer exists.

2.3 Specialist dementia hospital population

There were 1,886 NHS Old Age Psychiatry specialist beds for people with dementia in Scotland in June 2014 ^[s] . The work carried out by the Alzheimer Scotland National Dementia Nurse Consultant suggests that this number is likely to have reduced to some extent since the audit was carried out.

Official statistics provide approximately 1,850 as the number of NHS Old Age Psychiatry beds in 2016 ( ISD 2017) ^[t] . Official statistics also show that there are 4,400 Geriatric Medicine beds in 2017. These official statistics includes people with an organic illness (dementia) and those with a functional illness (mental ill health conditions such as depression, bi-polar and schizophrenia). It is therefore difficult to provide a precise number of patients with dementia, given the frequency of co-morbid conditions and under-diagnosis of dementia.

2.4 Advanced Dementia Practice Model and Advanced Dementia Specialist Team

Those providing day-to-day support require specialist support in responding to the complex physical, psychological and social issues that occur in advanced dementia. The Advanced Dementia Practice Model (Alzheimer Scotland 2015) provides an integrated and comprehensive approach to respond to this most complex phase of the illness and support people to remain in the community.

The Advanced Dementia Specialist Team provides the specialist input required to support those already providing care. They will provide expert assessment, medical interventions and guidance on skilled, person-centred approaches to care. These specialist practitioners are located within this team on a full, part-time or consultancy basis. It includes specialist consultants, psychologists, allied health professionals and mental health and general nursing practitioners.

The care plan provides a planned and coordinated approach to support the person through advanced dementia and end-of-life. It will identify the practitioners required to support the person's care, bringing in specialist support where this is not already being provided. This approach will enable most people to remain within the community. It will also provide the multi-disciplinary professional team necessary to enable people to safely transition from hospital to the community when they no longer have a clinical need to remain.

2.5 Current practice

Current practice is not consistent with this optimum approach to specialist care in dementia. The following section will demonstrate that people are currently being admitted to hospital who can be cared for in community settings and are then unable to be safely transitioned out because of lack of appropriate care in the community.