Various legal challenges have enabled refinement of the system and the models of care. Importantly, people who need NHS continuing care, whatever the setting in which that care is provided, receive the care free of charge. This is of course in complete contrast to care provision within the nursing homes, for which people contribute substantially to their financial cost using a means-tested formula¹. It has, however, been clarified that NHS hospital trusts are obliged to provide adequate NHS continuing care provision in some form. This has led to several major changes in practice:

1. A widespread review of continuing care provision within individual organizations, and an increased flexibility of that provision, which by and large has been helpful and appears to have reduced the widespread dismantling of NHS continuing care provision that was previously occurring as part of achieving ‘cost efficiencies’.

2. Setting up of review panels to consider all individuals referred for NHS continuing care to ensure that those individuals have sufficiently complex needs to require NHS continuing care rather than an alternative form of care such as that provided by private sector nursing homes.

3. Ongoing review of people receiving NHS continuing care to ensure that their level of need continues to meet the criteria for this type of care provision. This is a marked departure from the traditional philosophy, which was that NHS care provision was a ‘home for life’, and a change to a model where the expectation is that most individuals will achieve a reduction in the complexity of their needs as part of the treatment and care that they receive, enabling their needs to then be met within a private sector care facility.

The Alzheimer’s Society presented a comprehensive review of the definitions, framework and criteria for costings in 2007, and updated in 2008 to include new legal precedence¹.

Traditionally, NHS continuing care has been provided in dedicated inpatient ward environments. These wards still exist in some NHS settings but are poorly designed for the provision of care for people with severe dementia and often concurrent behavioural and psychological symptoms of dementia (BPSD). There are usually a limited number of private rooms, with dormitory facilities that make it difficult to respect privacy and dignity and to meet the needs of individual patients. In addition, the environments are not designed specifically for people with dementia, are often in a poor state of repair, are rarely ‘homely’ and infrequently have access to outside space. As a result, many NHS organizations have now either built or leased smaller, purpose-built units in a community setting, or set up contracts with private sector providers to offer NHS continuing care beds with an agreed level of NHS support. Although the provision of better designed, more homely facilities is likely to be an advantage, there has been limited evaluation of either model.

The proportion of people residing in care facilities who have dementia has consistently increased over the last 20 years, with most reports over the last decade indicating that at least two-thirds of care home residents have dementia, even though only a quarter of care home beds are registered specifically for people with this level of need^2,3 . As a consequence, there has also been some blurring of boundaries between different types of care provision with respect to the needs of the individuals for whom they cater. For example, the proportion of people with dementia in nursing homes and specially register beds is not substantially different from that in ‘ordinary care homes’^2–4. There also appears to be a similar blurring of boundaries between the specialist nursing homes and NHS continuing care, with a similar proportion of people with a similar severity of dementia and comparable high levels of BPSD in both settings⁴. This possibly suggests that some people are being placed in private sector care homes when their level of need may require NHS continuing care, either within a dedicated unit or by providing much more substantial NHS support to enable the effective care of those individuals.

There is an absence of published audit data or randomized controlled trials to provide a meaningful evaluation of usual NHS continuing care or novel models of care provision. An audit of 17 care facilities across the UK conducted in 2001 included 10 private sector residential or nursing homes and 7 NHS continuing care units⁵. Disappointingly, based upon daytime evaluation of well-being and activities, a similar pattern of impoverished daytime activities and poor overall well-being was evident in both care settings, and there was no evidence that NHS continuing care offered improved activities, well-being or quality of life for care recipients.

This does not reflect our anecdotal experience of clinical practice, and it will be increasingly important for more widespread evaluation of care using standardized approaches to measure overall quality of care provision, to enable benchmarking against the best care services and to enable continual improvement of professional practice and the quality of treatment and care provided.

Additional information is available from studies examining the transfer of people to different care environments when NHS continuing care facilities have closed. The primary outcome measure in these studies has tended to be mortality rates⁶ rather than wider health outcomes, and the effects of relocation on older people with dementia are not straightforward, with conflicting findings reported in different studies. For example, some authors such as Robertson et al.⁷ reported that disruption associated with the move was associated with higher mortality among residents after the move, while others found no increase in mortality or health problems⁸. However, two consistent findings did emerge from the literature relating to the relocation of older people with mental health needs. Firstly, that the moving of patients and staff together (‘en bloc’) minimizes disruption associated with the relocation. Secondly, that an individualized and comprehensive preparation programme is vital in maximizing the holistic outcome for the resident.

In a more recent report examining relocation of an NHS continuing care unit within the South London and Maudsley NHS trust, 23 residents from an NHS continuing care facility were relocated, 9 residents underwent individual transfers over a 12-month period and 14 were transferred ‘en bloc’ to a new unit⁹. The baseline assessments included an assessment of quality of life, which indicated ‘adequate coping’ and suggested considerably better quality of life than had previously been reported among people with complex mental health problems residing in long-term care¹⁰.

Importantly, the group of residents who were moved individually to new accommodation showed a significant decline in behavioural disturbance (as measured by the Neuropsychiatric Inventory), while the group who moved together to the new unit showed no change. This unexpected finding may be explained by the fact that considerable effort was taken to re-accommodate residents to locations of their and their relatives’ choice. Those residents who moved away to new units were often situated much closer to their relatives, which may have provided greater opportunities for social interaction. This in turn may have had a positive impact on residents’ behaviours. This does indicate that successful transfer of individual patients from NHS continuing care to other care environments can be achieved with careful planning and assessment⁹.

Several studies have evaluated more specific models of providing NHS continuing care, such as the domus model. ‘Domus care’ is provided in small units based in the community, operating with core ‘person centred’ principles and a ‘rites-based philosophy’ that the domus is the person’s home. Evaluation of this model has demonstrated advantages over traditional NHS continuing care settings¹¹. In particular, BPSD and communication skills improved significantly among residents, although providing this type of care was twice as expensive as traditional models. While it is encouraging that good quality care can result in improvements in well-being and communication, it is unclear whether this is a specific feature of the domus model, related to better staffing ratios or an example of what can be achieved by motivated staff in a well designed environment. As a proof of concept it is, however, extremely important, as it demonstrates that it is possible to provide high quality care that meets the needs of these individuals.

The recent change in NHS continuing care to focus on ‘rehabilitation’ to reduce the level of need and enable transfer to other settings such as private nursing home facilities is contrary to the ‘domus philosophy’, and is likely to result in significant changes in care practice and the style of treatment and care. Further evaluations will be needed to determine whether this has a positive or negative impact on people with dementia living in these environments.

Provision of high-quality NHS continuing care for people with dementia requires a highly skilled group of staff, a well-designed, purpose-built environment and excellent links with other medical, social care and palliative care teams to provide a physical and social environment that can meet a broad range of need. Key areas include basic activities of daily living (ADLs), social needs, BPSD, transfer, mobility and reduction of falls risk, management of pain and concurrent physical health needs, feeding, skin care, other needs related to end-of-life issues, working with families and understanding the legal framework within which this care must operate.

The majority if not all of the people in NHS continuing care settings will lack capacity to make decisions regarding their medical treatment or long-term care. Many such individuals can be looked after in these settings under the general provisions of the Mental Capacity Act 2005 in the best interest of these individuals so long as their care regime is not considered to deprive them of their liberties¹². Those whose care regime is so restrictive as to amount to deprivation of liberty will come under the new Deprivation of Liberty safeguards which can authorise detention in the individual’s best interests for up to 12 months after 6 assessments (the main issues are highlighted by Behan in a Department of Health Document, 2007)¹².

Some individuals may initially be admitted to an NHS continuing care unit under the auspices of the Mental Health Act (see¹³ for more detailed guidance on the 2007 Act), or such an order may be applied at some point during an individual’s care. These are mainly patients who object to being looked after in such settings.

Specific decisions regarding resuscitation and other end-of-life treatment issues are complex and fall under various legal frameworks. Staff working within this sector therefore would need to understand a complex network of legal frameworks, and how to work within these frameworks to achieve a level of treatment and care that meets the best interests of the individual patient. At an organizational level this requires excellent training and processes, and at a unit management level requires excellent operationalization of these processes so that they contribute to, rather than hinder, good quality treatment and care.

Most people with dementia of a severity sufficient to require residence in a care home or NHS continuing care setting will require at least some assistance with basic self care, usually requiring help, prompting or supervision for washing, dressing and going to the toilet. The opportunities and skills to engage in other more complex activities such as cooking, making tea and activities outside the care facility such as shopping are likely to be limited by safety concerns, the organization of the care setting and the skills of the individual. With well-thought-through care plans and an appropriate level of assistance and supervision it is, however, possible to enable many individuals to take part in a limited number of more ‘general’ activities as part of supporting social needs (see subsequent section). In NHS continuing care settings this will vary hugely between different individuals depending upon the balance of complex needs. Some patients will have very severe dementia, while others may have dementia of moderate severity with additional BPSD and/or physical health care needs. A full assessment of every individual is therefore essential, working to the principle of maximizing people’s abilities and competencies. Assessment tools like the Pool Activity Level¹⁴ and the person’s life story work^15,16 will inform the care planning process. As part of this assessment, detailed personalized care plans should be developed, outlining skills which it is important to enable people to continue using, self care activities which can be partly completed by the individual with appropriate prompting and help, and self care activities which need to be undertaken for the individual. In the latter circumstance it is also important to plan the support with self care in such a way as to maximize the opportunities it creates for normal social interaction, to minimize anxiety and distress, to make the assistance less challenging for the individual and