New Developments in Dementia Prevention Research

State of the Art and Future Possibilities

Kate Irving, Eef Hogervorst, Deborah Oliveira, Miia Kivipelto, Kate Irving, Eef Hogervorst, Deborah Oliveira, Miia Kivipelto

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351122696
• Edition: 1
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

New Developments in Dementia Prevention Research addresses a dearth of knowledge about dementia prevention and shows the importance of considering the broader social impact of certain risk factors, including the role we each play in our own cognitive health throughout the lifespan. The book draws on primary and secondary research in order to investigate the relationship between modifiable factors, including vascular and psychosocial risks, that may affect the incidence of dementia.

Bringing together world-leading expertise from applied science, medicine, psychology, health promotion, epidemiology, health economics, social policy and primary care, the book compares and contrasts scientific and service developments across a range of settings. Each chapter presents these themes in a way that will ensure best practice and further research in the field of dementia prevention is disseminated successfully throughout the world. Perhaps most importantly, chapters also question what type of social responsibility we are prepared to embrace in order to address the challenges inherent in dementia prevalence.

New Developments in Dementia Prevention Research includes contributions from leading authorities in brain health and dementia prevention and provides an essential contribution to the discourse on dementia prevention. It will be of great interest to academics, researchers and postgraduate students engaged in the study of the psychological and social aspects of aging and dementia.

Chapter 1

Introduction

Kate Irving, Deborah Oliveira and Eef Hogervorst

Why prevent dementia?

Dementia is a substantial public health issue and major societal challenge, and its prevalence is high and increasing. It is one of the conditions most likely to create fear and existential dread in people (McParland et al. 2012). Associations between neuropathology and the clinical condition are not fully understood. Such fear coupled with uncertainty has led to an industry of products and services claiming to ‘rewire your brain’ or ‘delay dementia by 10 years’. Much of this industry has no grounding in research evidence. The creation of myths around dementia prevention has to some extent damaged legitimate sources of evidence. It is tempting to make a plea to ignore such tensions and have a mature and balanced debate on the ‘actual evidence’. However, we must acknowledge that fear and dread are as much a part of the experience of being human as brain physiology; the body and mind form a dissociable whole. Much of what we will argue in this book is for population-targeted approaches aimed at behaviour change on modifiable factors, both risk and protective factors. This can only be achieved with a thorough appreciation of the nature of dementia and dementia prevention understandings among the population and how these understandings impact such attempts.

Inevitably, this chapter must start off by talking about what we are trying to prevent. Dementia can be understood as a dialectical interplay between neurological impairment and malignant social psychologies that happen to persons who go through a dementing process (Kitwood 1997, p. 51). The purpose of bringing this particular definition into play here in the context of dementia prevention is because it moves the conversation away from fear and empowers people to look at what is within their control. It shifts us away from awaiting scientific developments and towards action and agency. Kitwood has made an extraordinary impact on care models for people with dementia. However, what is less well understood is the impact of such a definition of dementia on dementia prevention.

A magic pill for the prevention of all but the rarest dementia diseases is not only unlikely – it is challenging to the human condition. This begs the question: Why then have attempts to reduce its incidence through public health interventions been so inadequate? Perhaps the answer lies in the complex jeopardies of ageing and dementia. Age is the largest factor in the development of dementia. Dementia is a disease of ageing, although not in itself part of ‘normal ageing’. Like other diseases of ageing, some people will prove very resilient to it; this is partly mediated by lifestyle, a major theme of this book. Perhaps part of the reason for the silence around dementia is ageism. There is a complex relationship between the stigma associated with dementia and ageism, and the two are very difficult to separate. This has been described as the overwhelming fear of an imagined future incapacity and the dread of ‘going into care’ with the isolation, reduction of autonomy and ‘othering’ this is perceived to bring (Higgs and Gilleard 2017). From the point of view of younger people working to maintain health and lifestyle, the fourth age ‘appears as a horrific apparition that dramatises “lack” in a rather potent way’ (West and Glynos 2016, p. 230).

Over many years, the human race has had this particular fixation on staying and being young. The picture from the 16th-century German Court painter Lucas Cranach the Elder (Figure 1.1) demonstrates that this is no new obsession. The picture clearly demonstrates the seductive docility of waiting for the ‘Fountain of Youth’. On the left of the picture we see the sick and elderly being wheeled up to the fountain and on the right, they skip out to engage in fun and feasting. So, it would seem fantastical notions of staying and being young are not a new feature of existence.

Figure 1.1 Fountain of Youth, from Lucas Cranach the Elder (16th–century), German Court Painter.

Of course, dementia is not a force for good in anyone’s life, but to what extent is dementia existentially worse than other diseases of ageing? What part of our fear of dementia is actually fear of societal response to cognitive impairment? This is not just a theoretical subtlety in the case of dementia. Debate on these issues is vital to furthering our understandings of behaviour in response to dementia prevention and even the allocation of funding to curative research over population-based risk reduction. How we talk about or ‘frame’ dementia (Van Gorp and Vercruysse 2012) will have a substantial effect upon how we manage to change policy, change clinical and wider community practice and ultimately, change individual behaviour. Building cross-disciplinary collaboration in the context of these understandings is what is required to manage the worldwide public health challenge of the ‘dementias’.

To prevent dementia on an appreciable scale, we will need to recruit all available skill and knowledge. This will require an understanding of the biology of dementia, but importantly, if we are to recruit people in anything more than taking a pill (acknowledging, even this can be difficult), we need to understand the sociological aspects of dementia. The editors’ endeavour is to create a resource for any medical, health or social researcher interested in the area of dementia prevention. We will present the major concepts of dementia prevention, the state of the art and the promising future trends from science and research to clinical practice and policy.

Health systems across the OECD spend less than 3% on prevention.¹ In the UK, the research impact report from the Alzheimer’s Society showed that only 5% of research funding (on average spent between 1990 and 2012) was allocated to studies of risk and preventive strategies.² Dementia research still has large emphasis on biomarkers, biochemical mechanisms, treatments and cures. There is a question of balance: What are the marginal benefits of redirecting some research funding away from traditional biomedical research and towards epidemiological and service development research? Redirection alone is not enough in the case of dementia prevention, particularly for those aspects which now have a moderate to strong evidence base. This knowledge needs to be normalized in mainstream prevention discourse. For example, many European healthy ageing policies are vociferous in their approach to cancer, heart disease and stroke prevention, but strangely silent about dementia prevention, despite very similar risk factors being involved. Dementia must be mainstreamed into major chronic disease prevention in order to give it the same legitimacy and standing in the eyes of the public and healthcare professionals alike.

We must ask why is there such invisibility on the subject of dementia prevention. There are, at least, four jeopardies in the dementia prevention message which may have contributed to this silence on the subject. First, it risks disenfranchising those who may or may not have engaged in lifestyles detrimental to their brain health – that is, those who are living with dementia. Clearly, there is a need to avoid any category of ‘victim blaming’ and use sensitivity regarding the communication of dementia prevention. Second, we know that focusing on individual agency is only a small portion of the issue – lifestyle is largely socially mediated. Lifestyle is not a choice for many living in difficult social circumstances. Third, it is not a simple message of cause and effect, but one of relative risks and population attributable risks and perhaps delay, rather than prevention in the true sense; these complexities are not quite amenable to ‘sound bites’. Finally, in popular discourse, dementia has been associated with animalism (McParland 2014), zombies (Behuniak 2011) and social death (Sweeting and Gilhooley 1997). It is unsurprising then that it is the chronic disease most likely to cause existential dread and fear in people.

Is also associated with existing perceptions of care, feelings of hopelessness or futility, and a profound fear of developing a condition that appears utterly arbitrary and totally beyond the control of the individual or the world of science and medicine.

(McParland 2017, p. 86)

In the In-MINDD study, the following quote was typical of the reticence of general practitioners to discuss dementia:

I would mention heart disease yes because there are treatments. Ideally you don’t want to raise a hair on the head if you don’t have something you can do about it.

GP Interview IE

When we spoke to people with risk factors, it was clear they took the conversation seriously:

The GP asked me if I wanted to participate. Then you get such a letter, and it says that you have one or more risk factors. And then I thought oh!

(Female, Netherlands, Intervention arm, Exit interview)

While there was no evidence that the advice was totally unpalatable, understanding about modifiable risk factors was low, and most believed that modifiable factors were negated by non-modifiable factors, particularly genetics.

In truth, the genetics of dementia are complex, contributing to familial dementia by causing genetic mutations or as a contributing factor towards genetically complex disease. Twenty-five percent of all people over 55 years of age have a family history of dementia (Loy et al. 2014). Very few of these cases are due to a specific genetic mutation, with only just over 500 such families reported (Cruts 2012). Rare single-gene disease is caused by a mutation in one of the 25,000 genes in the genome. Inheritance of this gene is associated with a 95% lifetime risk of dementia (Loy et al. 2014). Multi-factorial diseases are caused by genetic, behavioural and environmental factors, individually and in interaction. These genetic factors are variations that appear in the general population and each factor increases disease risk by a small amount. Families of course share behavioural, environmental and genetic influences, so it is not always the case that familial dementia is genetic. As genetic variations infer a small effect, and environmental conditions are also needed for complex disease, a person with complex disease is unlikely to pass on every one of their many genetic variations to a child. Because genetic variations are common, the offspring might inherit risk conferring genetic variations from the other parent. Genetic testing for complex disease has poor predictive power and is not recommended in clinical practice (Loy et al. 2014).

Studies of rare forms of familial inherited dementia may afford us useful insights into neurocognitive diseases. However, the studies are expensive and complex, and so far have attracted much funding with very little impact on the lives of people with dementia such that the treatment that can be offered now is not significantly different than it was 15 years ago. We do not call for an all-or-nothing approach to dementia risk; we call for a better balance between risk reduction strategies where the cumulative knowledge of multidisciplinary groups is considered outside of the scientific hierarchy of knowledge and firmly within a pragmatic hierarchy of what has the best potential to do the most good for the greatest number of people in the most expedient fashion.

There is some interest in the area of epigenetics in understanding the expression of dementia. Epigenetics mean ‘above genetics’ and includes mechanisms that involve chemical marking of chromatin (the form in which DNA is packaged with proteins in the cell nucleus). Epigenetic marks can induce chromatin remodelling and related changes in gene expression that are not caused by DNA sequence change. Many factors, including nutrition, age, gender, physiological and psychological stress, chemicals and infections, exert powerful influences on gene expression. It is believed now that epigenetic mechanisms are not one way but also potentially reversible (Ishino et al. 2013). Consequently, there is much interest in the role epigenetic signals play in synaptic plasticity, learning and memory. Many areas are still at the level of fascinating implications, but biological plausibility could lead to some significant development of this field.

Further to these sociological and genetic issues, there have been recent changes in the way dementia is diagnosed. In the DSM5, ‘dementia’ is replaced by ‘major neurocognitive disorder’, and less severe cognitive impairment is diagnosed as ‘mild neurocognitive disorder’; memory impairment is joined by visuo-spatial, language and other impairments. At present, the epi...

Table of contents

• Cover
• Half Title
• Series
• Title
• Copyright
• Contents
• List of contributors
• Foreword
• List of acronyms
• Book outline
• 1 Introduction
• 2 From prediction to dementia prevention
• Section I Established and emerging risk factors
• Section II Social, political and economic aspects
• Index