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Chapter 2
The historical development and state of the art approach to design and delivery of dementia care services
Introduction
Current understanding of dementia has evolved over some two centuries from pre-20th century conceptualisation of senility and dementia [1,2] and Dr Alzheimer’s original clinical observations [3] to modern descriptions of potentially causal pathologies [4–6] and assessment methods [7–9]. In a parallel fashion, changes in societal perceptions of dementia have shaped current models of dementia care [10–12].
The history of the study of ageing, including dementia, is characterised by continuous debate regarding which conditions are ‘normal’ and which are due to disease or deprivation [13] and this debate continues today to at least some degree [14,15]. Medical treatments are still somewhat controversial, and there are no evidence-based strategies to prevent Alzheimer’s disease [16].
Thus, the emphasis in dementia care is on trying to formulate evidence-based strategies to design and provide care for people with dementia and to support their carers.
The design of most dementia care services has its roots in generic care services for older adults and healthcare providers and healthcare systems did not distinguish between the two. Until the mid-20th century, most conditions of the ageing brain were considered irreversible, or at least consistent with other inevitable declines in health and vitality. Older adults with declining cognition or mental illness were often institutionalised in asylums or almshouses that provided custodial care, and for many an accurate diagnosis was considered irrelevant because the approach to care was the same regardless [17]. This diagnostic and therapeutic nihilism was decried at least as late as the 1980s [18].
Establishing a diagnosis is important for a number of reasons:
- It assigns a culturally accepted reason and label for the patient’s or family’s concerns.
- It provides an entry and pathway for formal care and it dictates the types of professionals who can provide that care.
- It enables researchers to develop consistent and comparable research.
- It provides clinicians with therapeutic criteria.
The efficacy of any therapies then defines which diagnoses are treatable, in turn providing further rationale for diagnosis. The availability and efficacy of treatments often leads to a recategorisation of conditions believed to be due to normal ageing as opposed to disease or deprivation.
In the 1950s, editorials in the medical literature began to warn of an impending crisis stemming from the confluence of three major social changes:
- the projected growth in the older adult population
- the growing cost of care for older adults with mental illness in asylums, almshouses and hospitals
- the lack of information about which patients with which diagnoses needed what type of care and in what setting [19,20].
As the sheer numbers and plight of these individuals were revealed, families, healthcare professionals, advocates and public policy experts began to ask questions, and it became of paramount importance to begin sorting out which problems of the ageing brain were due to the ageing process itself and which were due to disease or neglect.
Clinical epidemiology
The brief history in the next section begins with large-scale clinical epidemiological studies seeking better to understand the health of older adults. These led to more detailed inquiries into the epidemiology of mental illness among older adults, in turn ushering in large-scale population based studies into risk factors and neuropathology of dementia. Findings from these studies led to research seeking to organise medical, social and financial resources to improve the care of older adults with dementia.
Early surveys of the health of older adults
Our focus on the origins of the current care and treatment paradigm begins with surveys of sickness in the UK following the Second World War. In 1947, Rowntree carried out one of the first community-based surveys of the health of older adults, and he reported four key findings:
Studies of this type helped us understand that an important component of the disability associated with ageing is due to social and economic hardship, rather than just ageing or illness. Further investigation of a random sample of Rowntree’s original population showed that 11.2% of subjects living in the community had evidence of cognitive impairment, 3.8% were severely cognitively impaired and 3.2% were ‘eccentric’. Furthermore, 10% were found to have episodes of depression and 20% reported loneliness [22].
Many of the brain-based problems of ageing were considered irreversible and were often lumped under the heading of ‘senility’. From an individual’s perspective, the term ‘senility’ meant the dread of losing one’s functional capacity with age and the likelihood of becoming a burden on family resources. From a societal perspective, it also captured a biased picture of the elderly as being ‘useless’ and a significant drain on social and medical resources [12]. Thus, the prevailing perception of the medical and lay community was that senility, and other brain-based illnesses associated with ageing, inevitably leads to functional decline and eventual institutionalisation and death.
In reviewing the history of dementia care, it is difficult to escape the fact that the cost of institutional care was a major driver of investment into community services and it continues to influence the content, design and quality of care [23]. The magnitude of the burden of care for these older adults has typically been viewed as so extreme that it undermines the quality of care for other conditions and age groups: terms, such as ‘bed blockers’ (hospitalised older adults, whose discharges are presenting with difficulties), are well known to medical practitioners. However, these early studies began to challenge the notion that all cognitive impairment associated with ageing was irreversible or progressive.
In 1951, Felix Post reported the outcomes of 214 older patients admitted to a psychiatric hospital in the UK. After three years over 50% had died, 20% remained in hospital and nearly 25% had returned to the community [24]. In 1952, Roth and Morrissey published a retrospective review of 150 older adults admitted to a psychiatric hospital in the UK. While they were surprised to find that 50% of admissions were for depression, they suggested that there were clear lines of demarcation between the presenting symptoms and outcomes of patients with affective disorders as opposed to ‘senile psychoses’ [25]. Early studies such as these catalysed a new field of inquiry into the proper assessment and classification of both cognitive and affective disorders, as well as studies of prevalence and risk factors in community settings. Most importantly, these studies began to fracture the image of irreversible impairment, inevitable institutionalisation and early death for persons with mental illness in old age. They also revealed that a large group of older adults with cognitive impairment live in the community.
Clinical epidemiology of dementia
The early history of senility and dementia begins to coalesce into the current concept of ‘Alzheimer’s disease’ in the 1960s, with further refinements in the methods of clinical epidemiology. In 1964, Martin Roth and colleagues conducted the first prospective studies of mental disorder in old age [26–28]. They assembled random samples of community-dwelling and institutionalised older adults in the same city and reported that 10% of community-dwelling subjects had organic brain syndromes, including 4.9% with ‘severe mental deterioration’, while 31% of those with psychiatric illness had ‘functional psychiatric disorders’. Reflecting on this work many years later, Kay commented:
‘Prevalence rates in the community were high; institutional cases were the tip of an iceberg and the burden of care fell on relatives, pointing to the need for community services’. [29]
The same team later described a correlation between post-mortem senile plaques and pre-mortem cognitive function [30,31]. Previously the scientific community debated the similarities and differences between: (1) normal brain ageing and disease; (2) senile psychoses, affective disorders and organic brain disorders and (3) presenile and senile dementia. With these new findings, the focus shifted to the correlation between cognitive function and histological pathology, but findings were inconclusive [32]. Roth et al. attributed some of this to inaccurate or non-standardised clinical diagnoses and later reported that using standardised assessments led to a ‘highly significant association’ [33].
Armed with the hypothesis that some age-related cognitive decline might be due to disease (with the potential of being treatable), together with some early agreement on diagnostic criteria and improving techniques in neuropathology, investigators conducted multiple population-based studies of cognitive impairment among older adults. Zaccai et al. [34] completed a systematic review of some of these studies. They concluded that major contributions of these studies have been to validate pre-mortem diagnostic criteria, as well as generate various hypotheses for further investigation, such as potential targets for medication and the contributions of various risk factors, for example, genetic predisposition, vascular disease, inflammation, traumatic brain injury and lifestyle factors [35,36].
One example is the Cache County Study in Utah in the USA: more than 5000 adults over 65 were enrolled, undergoing regular clinical assessments, including investigation of blood parameters and genetic samples. An important finding with particular relevance to designing dementia care services was the high prevalence of behavioural and psychological symptoms among community-dwelling subjects with dementia [37,38].
Care needs of persons with dementia
Agreement on research diagnostic criteria of Alzheimer’s disease and studying its prevalence in the community is of critical importance, but a very different undertaking from developing care models and a healthcare system capable of responding to unmet care needs. In the 1950s, most patients with early stages of dementia lived in the community and were cared for by family members, a fact that remains true today. For many families, the burden of care was so great that it affected their financial prospects, and this strain was for instance one of the key drivers of the original Medicare and Medicaid legislation in the USA [39], where in the 1960s (in concert with the de-institutionalisation movement) asylums and state mental hospitals began discharging patients with dementia, at the same time that nursing homes were attempting to limit admissions [23,40,41]. Opportunities for early diagnosis and treatment, as well as prevention, were greatest through local community resources, including primary care, so that by 1960, many were calling for a fundamental redesign of the healthcare system to improve community-based care. Kay et al. wrote that:
‘The key concepts on which a modern geriatric service must be based are as follows: (a) integration of services on a practical level to make the most efficient possible use of all the facilities available; and (b) early ascertainment of high-risk groups, thus allowing resources to be focused where they are most needed and enabling preventive and therapeutic efforts to be started at an early stage. It is becoming widely recognised that fulfillment of these aims hinges very largely on improving and coordinating the domiciliary services provided by the general practitioner and the local authority’. [42]
They also called for the development of special geriatric units that could support general practitioners caring for older adults [42]: many attributed a whole range of conditions to the inevitable consequences of ageing, resulting in under-recognition and under-reporting of diseases in the elderly [43]. Williamson et al. showed through geriatric clinics that as many as 50% of older adults could be shown to suffer from remediable or treatable conditions [44], a finding frequently repeated since.
The clarion call for a major societal response to Alzheimer’s disease was perhaps best captured in 1976 by Robert Katzman, stating:
‘Alzheimer’s disease and senile dementia are a single process and should, therefore, be considered a single disease’. He added: ‘Alzheimer disease may rank as the fourth or fifth most common cause of death in the United States’. [19]
This contributed to the establishment of the Alzheimer’s Association in the USA and the National Institute on Ageing [11,45]. Similar alerts to the growing ‘epidemic’ were published in the UK, calling for more research on the appropriate design of services, as well as efforts to educate providers and families [20]. Specialist care units started to be designed, with an emphasis on accurate diagnosis, proactive treatment and the role of the physical environment in optimising function. Specialist outpatient clinics were developed later and some focused on building capacity for research as well as delivering care and providing information. By the 1980s, expert recommendations started to emerge to guide psychiatrists, neurologists, geriatricians and other practitioners in the diagnosis and management of dementia [10,46–48]. These guidelines were informed primarily by expert opinion, rather than based on clear evidence.
We turn now to the evidence base for state-of-the-art dementia care services, as has accrued since.
Dementia care research
Research into the evidence base for dementia care services falls into three broad categories:
And three more specific ones:
Psychosocial research
Family caregivers (mostly women) have always been and are likely to continue to be the main providers of care, even for those with severe cognitive and functional impairment, but the importance of their role has often not been fully recognised [49]. Little has changed in terms of the importance of the role of families [50], and Maurer et al. observed that 21st century
‘disease management would hinge, as it did 100 years ago, on the efforts of a compassionate team of professionals working with [her] and [her] family to achieve the best possible outcome for this incurable, progressive, neurodegenerative disease’. [51]
The history of psychosocial interventions can be broadly characterised as evolving over a number of overlapping and co-occurring phases. Initially, psychosocial intervention research emerged from an understanding of both the importance and the stresses of the generation that is called up to provide care for ageing parents, concurrent with care for young children (the ‘sandwich generation’, as it is known in the USA). One example is the work of Elaine Brody at the Philadelphia Geriatric Center in the USA in the 1960s and 1970s [23,40,41,45]. At the time, nursing homes excluded older adults with significant illnesses. By following the ‘excluded’ older adults and the problems of their caregivers, Brody and colleagues sought to support them and avoid institutionalisation through education and activation of community resources. Various caregiver intervention studies subsequently focused on the benefits of psycho-educational and supportive programmes including respite care and care management. Results from these early efforts were mixed, with individualised approaches demonstrating better outcomes than group interventions [52].
Another example from this initial phase is Lawton and colleagues’ project, which found that those offered formal respite care maintained their relative longer in the community, although it was ineffective for caregiver burden and caregiver mental health [53]. The Medicare Alzheimer’s Disease Demonstration Project is an example of an attempt to improve caregiver outcomes through case management and subsidised community services, thereby decreasing nursing home usage [54,55]. However, the investigators were unable to demonstrate substantial reductions in caregiver burden, caregiver depression or nursing home placement, and concluded that interventions needed to be reformulated to include coordination with primary care and/or chronic disease management.
Limitations of these early studies include an almost exclusive focus on caregiver burden and depression, poor description of interventions, lack of attention to treatment concordance, and use of global outcome measures that were too distal from the purpose and content of the interventions being tested. Building on these early endeavours, more sophisticated randomised trials were subsequently developed in the mid- to late 1990s, such as the seminal study by Mittleman and colleagues. This team conducted a clinical trial to determine the long-term effectiveness of comprehensive support for spouse-caregivers and their families. The intervention was designed to postpone or prevent nursing home placement. After 8 months, caregivers in the intervention arm were significantly less depressed than controls, nursing home placement was delayed by 1.5 years and this delay was not at the expense of the caregivers’ mental health [56–58]. No other studies have replicated this delay in institutionalisation, but the study did have a number of methodological limitations.
Intervention research has continued to advance with more robust randomised trials. One example is the Resources for Enhancing Alzheimer’s Caregiver Health (REACH I), with six interventions:
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