Designing and Delivering Dementia Services

Hugo de Waal, Constantine Lyketsos, David Ames, John O'Brien, Hugo de Waal, Constantine Lyketsos, David Ames, John O'Brien

• Publisher: Wiley-Blackwell
• Year: 2013
• ISBN:
  9781118378687
• Edition: 1
• Topic: Medicine
• Subtopic: Geriatrics

Dementia is increasingly and widely recognised as a serious health and social challenge, in the developed world as well as in the developing world. The need therefore to design and implement dementia care services of high quality is becoming more and more vital, particularly given the likelihood of ever increasing demand in a world, which likely sees resources at best remaining at current levels.

Designing and Delivering Dementia Services describes current developments in the design and configuration of dementia services. It offers an informative and detailed overview of what constitutes high quality care, considering the circumstances patients and carers may find themselves in.

For dementia to get the priority it deserves, a number of factors are important and the book charts the invaluable contributions of various Alzheimer's Associations and Societies: this provides a focus on dementia strategies and plans at national levels: the book reports on the state of affairs regarding such strategies and provides a unique insight into the process of how one of these was developed and implemented.

Recognising the need to prove that service developments lead to a higher quality of care, increased productivity and increased efficiency, the book links the resulting picture to service-based research methodologies, with an emphasis on the strengths and limitations of that research.

Contributions from 17 countries on 4 continents give an overview of the state of affairs across the world, paying attention to successful - and less successful - initiatives to improve dementia care. The book furthermore provides pragmatic approaches to ensure planning becomes reality, highlights the need for structured workforce development, education and training and describes the opportunities afforded by assistive technology.

This book is of prime informative and practical value given that pressures on dementia services are projected to mount across the world against a backdrop of limited resources and expertise.

Designing and Delivering Dementia Services

• Defines the problems involved in meeting an increasing demand for dementia care services in a poorer world
• Maps initiatives and developments in the design and configuration of these services in a variety of international settings
• Analyses these developments against the background of political and health economic circumstances
• Provides a road map of where health services should go in response to this growing challenge.

The first book to define, analyse and map initiatives for dementia care services in a time of increasing demand and decreasing resources, this book is essential reading for commissioners, senior clinicians and service planners in health and social care. It will also be of interest to academic researchers involved in qualitative services research as well as quantitative health economic research, health and social care managers and those involved in workforce planning and development.

Section 1

The need for dementia services of excellence: Setting the scene

Chapter 1

The need for dementia care services

Gill Livingston and Claudia Cooper

Mental Health Sciences Unit, University College London, UK

The problem of dementia: A historical perspective

Dementia is largely an age associated disease. It was relatively rare prior to the rapid increase in the average life spans of people in the developed world in the 20th century. Nonetheless, Plato and other writers from ancient Greece and Egypt described a major memory disorder associated with ageing. Philippe Pinel (1745–1826) and Esquirol (1772–1840) were among the first to define dementia: Esquirol described it as ‘a cerebral disease characterised by an impairment of sensibility, intelligence and will’. In 1906, Alois Alzheimer first described what came to be known as Alzheimer's disease (AD), a degenerative and severely debilitating neurological disorder. He regarded the condition as a relatively rare form of dementia, generally afflicting patients younger than 65. This belief that senile dementia was an inevitable consequence of ageing and distinct from pre-senile dementia, an unusual disease with specific cerebral pathology occurring by definition in people aged under 65, remained unchallenged until the 1970s. In 1976, Katzmann suggested that many cases of senile dementia were pathologically identical to AD [1]. He called Alzheimer's a ‘major killer’ and the fourth leading cause of death in the USA. His seminal editorial revolutionised the care of older people with dementia, who could be diagnosed as having a disease, rather than suffering from an inevitable part of normal ageing. This paved the way for the first trials of dementia treatments. In the decade prior to his publication, fewer than 150 articles were published on the topic of AD. There were virtually no trials of pharmacological or non-pharmacological treatments for dementia. Since 1976, research interest in dementia has blossomed, with PubMed recording nearly 9000 publications about Alzheimer's and nearly 20,000 about dementia in 2011 alone.

The need for dementia services

The number of people with dementia is currently estimated as 35 million worldwide, and this number is projected to double every 20 years due to increased lifespan, with numbers reaching 66 million by 2030, 81 million by 2040 and over 115 million by 2050 [2,3]. The largest numbers of people with dementia are currently in China and the developing Western Pacific, Western Europe and the USA [4]. It is estimated to cost $600 billion annually, which is equivalent to 1% of the gross domestic product [5]. Worldwide dementia contributes 4.1% of all disability-adjusted life years and 11.3% of years lived with disability [5].

Dementia affects the person with the illness, their family and society through loss of memory and independence, challenging behaviour, and often decreased well-being of both the person with dementia and their carer(s). All of these aspects require social and healthcare services and therefore have cost implications. The largest cost is for 24-hour care.

Managing dementia

In the last 15 years, symptomatic treatments for dementia have become available. Alongside these, growing evidence bases of non-pharmacological interventions for dementia and treatment of neuropsychiatric symptoms have developed. While disease-modifying treatments for dementia are not yet available, many promising trials, targeted mainly at beta-amyloid but also, for example, at tau phosphorylation or aggregation and glycogen synthase kinase-3 (GSK-3), are underway and will be reported soon. Meanwhile, developments in the symptomatic treatment of the illness have been drivers to transform dementia care. The benefits of early diagnosis and thus access to treatment are now clear, and this has led to developments in setting up of dementia specific services in the developed world.

Good dementia care has thus changed over the last decades to encompass the provision of active evidence-based treatments, including psychosocial and educational management, as well as drug-based treatment and access to research participation. This chapter will discuss the components of current high-quality, evidence-based dementia care from prevention to diagnosis to end of life care, and how this compares with current service provision.

Screening and prevention of dementia

Management of risk factors

There are many potentially modifiable risks or protective factors for dementia. There is clear evidence from observational studies of the protective effects of cognitive reserve (helped by intellectual or social activities and occupation), Mediterranean diet, exercise or physical activity, and potentially modifiable medical risks, such as midlife obesity, midlife hypertension and hypercholesterolaemia, smoking, diabetes, depression, and stroke [4,6]. Randomised controlled trials have been inconsistent in showing that controlling hypertension reduces the risk of developing dementia, and trials of statins have been negative [4]. Thus, while those measures are potentially important and controlling them has theoretical potential to prevent up to half the incident cases of AD, there is little evidence as to their real-life effect [4,6]. This may be because vascular factors in midlife increase the risk of Alzheimer's and vascular dementia, while the interventions studies have enrolled older people as participants [7]. Although treating hypertension and hypercholesterolaemia are not yet shown to reduce dementia at a population level, reducing risk of cerebrovascular events in those at high risk is clearly a rational step to preserve cognition, as well as being part of good primary care.

Pre-dementia syndromes

There is a growing body of evidence that dementia may be preceded by a period of subjective cognitive impairment without objective impairment [8]. This raises the possibility of screening for pre-dementia syndromes in order to intervene at an early stage. Self-reported memory problems are currently the best single indicator we have of objective cognitive problems [9], but their sensitivity for detecting future dementia appears fairly low. A third of people who screened negative for dementia reported forgetfulness in the past month in a large English survey, and this symptom was not related to age, suggesting that reporting forgetfulness was not a prelude to dementia in most of the younger adults who reported it [10]. Although currently there is little evidence for effective treatment strategies before the clinical dementia syndrome becomes apparent, this would be the logical time to use disease-modifying drugs if they become available, because the pathological changes are thought to precede the clinical picture of neurodegenerative dementias by many years.

Mild cognitive impairment (MCI) is a better indicator of incipient dementia with more than 50% of people with MCI progressing to dementia within 5 years, although some people with MCI remain stable or improve [11]. Patients presenting to memory clinics with MCI have an 18% per annum conversion rate, which is higher than the rates reported in epidemiological studies, and people with poor verbal memory, executive functioning deficits and accompanying neuropsychiatric symptoms are at particularly high risk [11]. Neuropsychiatric symptoms in MCI are common and persistent [12]. Thus one strategy for early diagnosis and intervention is to follow up patients presenting to clinics with MCI: this would also enable clinicians to modify risk factors and treat any neuropsychiatric symptoms.

Raising awareness

Assisting patients and carers to recognise dementia and seek help will equip people to play a more active role in their health care [13], but current evidence suggests that community-based campaigns to raise awareness about seeking help for memory problems are insufficient to promote early assessment and diagnosis of dementia [14]. In the UK, the Alzheimer's Society's 2008 ‘Worried about your memory?’ campaign provided useful information about when to seek help, for example, if your memory (or that of someone you know) is getting worse or impacting on everyday life. Targeting similar information at all adults may improve detection of objective cognitive impairment and common mental disorders. Pre-screening those who are worried about dementia in primary care ensures that specialist memory services are well targeted.

Tackling stigma

Stigma is an important barrier for many in seeking a diagnosis for themselves or their relative [13]. In Japan, a successful campaign to raise public understanding and awareness of dementia included re-labelling dementia from ‘Chiho’ (an untreatable blockage of intellectual activities, a senile insanity) to ‘Ninchisho’ (this dementia is thought to be treatable and possibly preventable with computer games, exercise and cardiovascular health – although there may still be stigma attached to it) [15]. This changed the emphasis from long-term care of those who were not able to have social relationships to community care and inclusion. Stigma may increase social isolation in dementia where people avoid those with the illness. It may also operate within services and institutions, with for example people with dementia excluded from services they may benefit from.

Service configuration

In the remainder of the chapter, we will discuss interventions that are evidence-based and the mismatch between these and the services delivered.

Services for people with dementia and their carers have until recently evolved, influenced by historical, national and local agendas, rather than being actively planned with consideration of the evidence. Different professionals and services between and within countries have offered services ranging from diagnosis with immediate discharge to integrated health and social care with ongoing monitoring and help with changing problems. A number of countries, including Norway, the UK, the Netherlands, France, Switzerland and Japan have now developed national strategies for dementia [15]. In addition, there are guidelines for treatment of dementia in the USA, Canada, Germany, Italy, the Netherlands, Spain and Singapore [16–18]. These strategies and guidelines have a common theme, emphasising the importance of awareness, early diagnosis, information provision and advice for people with dementia and their carers with a model of cooperation between primary and secondary care, along the lines of referral to a memory clinic and community care [15,16,19]. Memory clinics, first developed in the USA, began to spread in the early 1980s. These actively designed services seek to introduce help and services earlier than occurred with traditional service models, where early referral of uncomplicated cases of dementia to secondary care, or indeed early diagnosis, were not encouraged, and diagnosis was more likely to occur at a point of crisis. People with dementia who use home care services were 22% less likely to move to a care home in a US 3-year cohort study [20]. Services now try to ensure people with dementia are cared for at home for as long as possible, both because that is what most people choose for themselves and ...