Assessing the need for services

Ideally patients are evaluated during the mild stage of their disease, with groundwork laid in anticipation of the inevitable need for increased support and supervision. Unfortunately, it is not uncommon for a person to present for initial evaluation when the disease has already progressed to the moderate stage. In either case, people with moderate dementia will require ongoing assessment and continual reassessment in order to respond to changing needs for services and multiple transitions in care.

In order to determine the type and extent of services required, assessment of the person with dementia should include three domains: cognitive, functional (including nutritional and mobility assessment) and behavioural. The assessment process pinpoints the areas of services required and provides a baseline for comparison as the disease progresses. Co-morbidities in people with dementia should also be assessed throughout the course of the disease, especially if sudden changes in cognitive or behavioural symptoms occur [19]. In a large post-mortem study, co-morbid conditions were found that would have affected the clinical management of the person with dementia, had they been known ante mortem [20]. Depression, falls, mobility issues and malnutrition are very common complications and should be evaluated as well. Comprehensive assessment should include the individual’s primary caregivers’ and support systems. The impact of caregiving responsibilities for people in moderate dementia is tremendous. As the person with dementia becomes more dependent, family caregivers often experience significant psychological and physical illness, with accompanying high levels of anxiety and depression, and they too will need support [21,22].

Goals and desired outcomes of services

The principal goals of services for moderate dementia are:

• the optimisation of physical health, cognition, activity and well-being
  
• the detection and treatment of behavioural and psychological symptoms of dementia (BPSD)
  
• the provision of information and long-term support to caregivers [57].

Traditionally, these goals have focused on aspects external to the patient, such as safety and hygiene. Indeed, the majority of care required is basic and task oriented, but more recently goals have expanded to include maintenance of personhood.

Kitwood’s social–psychological theory of ‘personhood in dementia’ asserts that although a degeneration of cognitive functioning occurs due to disease progression, individuals do not disintegrate from a psychological and emotional point of view [58]. Younger and Martin described good dementia care as ‘that which enables the person to feel supported, valued and socially confident’. They proposed ‘a shift in the culture of care’ advocating meaningful activity, which must take place on recreational, interpersonal and therapeutic levels, with reminiscence and stimulation as part of the process [59].

Bamford and Bruce described the overall aim of community care for patients with dementia as having access to normal activities and patterns of life in ways that maximise choice and control. They distinguished two types of community-care outcomes for patients with dementia: quality-of-life outcomes and service-process outcomes.

Quality-of-life outcomes include:

• access to social contact and company
  
• a sense of social integration
  
• access to meaningful activity and stimulation
  
• maximising a sense of autonomy
  
• maintaining a sense of personal identity
  
• feeling safe and secure and feeling financially secure
  
• being personally clean and comfortable
  
• living in a clean and comfortable environment.

Service process outcomes include:

• having a say in services
  
• feeling valued and respected
  
• being treated as an individual
  
• being able to relate to other service users [60].

Because caregivers experience significant stress that may affect their own health, the goals of caregiver support and reduction of caregiver burden are strongly emphasised. Services that help caregivers include:

• support to continue caring for the person in their own home for as long as practical
  
• maintenance of a caring relationship between caregiver and patient with dementia
  
• provision of fulfilment and satisfaction in the caring role [61].

Avoidance of premature institutionalisation or nursing home placement is an overarching goal for services for people with dementia anywhere in the world, for financial reasons as well as other factors:

• Nursing home entry is associated with rapid declines in health, increased mortality and emotional challenges for families [62].
  
• The psychosocial effects of nursing home placement include increased stress and confusion while adapting to a new environment.
  
• Caregivers can feel increased guilt with fear that their relatives are not receiving adequate care, leading to conflicts with nursing home staff.
  
• Nursing home placement does not decrease caregiver distress [63].

Although delay in nursing home placement is desired, the decision should be supported when it becomes ultimately necessary.

Approaches for services in moderate dementia

Although there are considerable variations in services, all face the same challenges of fragmentation, disjointed care and high costs. The economic impact of dementia, particularly for people in the middle and late stages of the disease, is enormous and a major contributor to overall cost in health care. Furthermore, it is projected that 43% of people with dementia will need a high level of care and supervision [64]. This burden has a great impact on how healthcare systems organise services and finance care.

Primary care providers are usually the first point of contact, but primary care practitioners cannot provide the necessary care services alone. Current clinical guidelines for best-practice management of dementia are extensive and include:

• appropriate treatment of co-morbid medical conditions
  
• optimisation of physical health
  
• development and implementation of an ongoing treatment plan
  
• use of cholinesterase inhibitors and memantine
  
• treatment of behavioural problems and mood disorders with both pharmacologic and non-pharmacologic interventions
  
• referral to specialists and social service agencies or support organisations [4,19,65,66].

The diverse and individual nature of dementia and the caregiving experience requires a carefully tailored, individualised approach to services and is therefore best delivered using a multidisciplinary approach. Coordination of care is invaluable, and there is evidence that access to case management services results in an increased uptake of community services [67,68].

A collaborative framework has been shown to improve quality of care for people with dementia and their caregivers [57,69]. Optimally, this would include well-educated primary care teams who focus on continuing care needs, with regular assessments, medical health maintenance, treatments for behavioural and psychological symptoms of dementia, and use of community support services. An example of this type of approach is the UK-based Croydon Memory Service Model, which utilises a multi-agency approach to provide specialised assessment and care [70]. This model includes joint ownership by health services, social services and the voluntary sector. An ideal model would consist of a collaboration between general practitioners and specialised memory clinics or specialists (e.g. geriatricians, neurologists and psychiatrists) to create a tailored programme for individualised care [19,71]. To achieve such optimal care advanced education for general practitioners is needed, combined with structural changes, such as increased visit time, appropriate funding and availability of interdisciplinary teams. To prevent and ameliorate behavioural and physical crises, rapid and expedited access to outpatient psychiatric care and rapid response home care visits are recommended [72].

The process of service delivery is also important. There has been a paradigm shift from providing formal services for people with dementia to working with people and their caregivers [73]. Particularly in the early and middle stages of the disease, people with dementia are able to provide accurate and valid reports of their experience with services [60,74]. Nolan and colleagues developed a ‘Senses Framework’ that is based on the belief that all parties involved in dementia care should experience relationships that promote a sense of security, belonging, continuity, purpose, achievement and significance [75]. This led to the development of ‘The authentic partnership’, which emphasised that early establishment of a strong partnership between people with dementia, family caregivers and professionals is likely to provide a better sense of the wishes and desires of the person with dementia, even as the disease progresses [73].

Integrated models of care for older adults

Well-known models which fully integrate services for older adults include:

• Programme of All-inclusive Care for Elderly People (PACE) [76]
  
• Systeme de Soins Integres pour Personnes Agees (SIPA) [77]
  
• the Programme of Research to Integrate Services for the Maintenance of Autonomy (PRISMA) [78].

These three successful models of care have common characteristics (note: they are not specific for people with dementia) [49]:

• umbrella organisational structure
  
• case-managed, multidisciplinary teams to evaluate, plan and provide patient needs
  
• organised provider networks joined together by standardised referral procedures
  
• services agreement
  
• financial incentives.

Internationally, the Netherlands is the only country to develop a separate nursing home medical discipline. This specialty developed a continuum of medical care (‘The Dutch Model’), where family physicians serve the community, the nursing home physician provides care for the institutionalised older adults and the clinical geriatrician and other medical specialists care for older adults who are hospitalised [79].

The Dutch large-scale residential and nursing home facilities were designed by Herman Hertzberger more than 35 years ago. The original 520-bed care home utilised a ‘village within the community’ concept of care [80]. There are a broad range of institutional and outreaching care functions that makes the Dutch Model unique, including day care, rehabilitation, residential care, supervised group living, specialised dementia care, stroke care and nursing care, all at one site. This model provides a multidisciplinary, cyclically evaluated systematic approach to dementia care [81]. It is an exemplar system that provides smooth transitions of care across settings.

These examples exhibit the qualities of best-practice dementia care by focusing on maintenance of function, prevention of acute exacerbation of disease, prevention of disease, and cure or palliative care for acute conditions. The various components are integrated and are therefore best able to encompass medical, social, rehabilitative and personal care services, while ensuring services adjust to the functional and cognitive decline and link services for pharmacology and psychosocial treatments.