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MUSIC THERAPY RESEARCH AND ALZHEIMER’S DISEASE

Problems, Perceptions and Possible Solutions

Master’s Thesis Miguel de Sousa

Music Studies (Arts and Culture) University of Amsterdam August 2019 Supervisor: dr. M. Sadakata Second reader: dr. J.A. Burgoyne

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ACKNOWLEDGEMENTS

I would like to start by thanking dr. Makiko Sadakata for all of her help during the process of writing this thesis. It would simply not have been possible without her constructive criticism and unwavering patience.

Secondly, I would like to thank my friends and family for listening to me ramble on with my half-formed ideas and for putting up with my moaning when the writing got rough.

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TABLE OF CONTENTS

Abstract……….4

Introduction……….……….….5

Part I: Problems in and Perceptions of Music Therapy Research………..9

Common critiques of music therapy research..………9

The music in music therapy……….12

Music therapy research and cognitive science music research: overlaps and discontinuities………14

Reductionist research approaches……..………..18

Summary of Part I………19

Part II: New Approaches and Future Directions………..…..20

Profiling Alzheimer’s disease………..21

The three-stage model………..22

The seven-stage model……….23

Combing the two models for research………..25

Future directions……….27

Microanalysis and metanalysis in music therapy research………..27

Collaborative data collection and analysis………..28

Summary of Part II……….30

Conclusion……….31

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ABSTRACT

Even though the benefits of music engagement on people with neurodegenerative

conditions such as Alzheimer’s and Parkinson’s are well documented in academic literature, considerable amount of music therapy research reaches ambiguous results or is dismissed as anecdotal by “harder” scientists. This does not automatically mean that music therapy is pseudoscience, but instead calls for reconsidering the way the field is viewed from a “hard” scientific perspective and for addressing some important developments in how music therapy research has been approached in recent years.

Research in music cognition has been crucial to revealing the sheer complexity of trying to unravel the roles of cultural biases, personal experience and individual differences in music perception from the underlying mechanisms responsible for how the brain processes music. The difficulties caused by how engrained these so-called “external factors” are in the

musical experience carry over to research in music therapy concerning neurodegenerative conditions, which faces additional challenges caused by the variability of said conditions and the entailing difficulties these factors cause when attempting to meet scientific sampling standards. This thesis addresses currents developments and future directions in music therapy research focused on Alzheimer’s disease, a complex and increasingly common condition.

The thesis will also explore the epistemological limitations of researching music therapy from a reductionist perspective, as well as the different aims of research in music cognition and music therapy. In doing so, it is important to address the concepts of music as therapy rather than an ology’s study object and how music therapy is more reactive than

prescriptive. New research methods in the field will be discussed, such as metanalyses and microanalyses, and the case for moving away from studying music therapy with a

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INTRODUCTION

Alzheimer’s disease is the most common form of dementia. Alzheimer’s is not so much a single “disease” and instead is a diagnosis used to describe a range of symptoms associated with cognitive decline. While a certain cognitive decline is common with ageing, Alzheimer’s disease is noted for displaying a particularly severe level of progressive deterioration. It is associated with a range of neuropsychiatric symptoms such as apathy, depression and sleep disorders and worsens substantially over time, eventually leading to language difficulties, aggression, hallucinations and death (Wolinsky et al. 2018). With a global ageing population, Alzheimer’s disease and other forms of dementia have been increasing annually around the world at a steady rate and are consequently demanding more resources and public

expenditure to treat (Ali 2015).

At the time of writing there is no cure for the disease. Current treatments are typically medication-based and, as the deterioration progresses and neuropsychiatric symptoms worsen, can potentially also end up relying on physically restraining patients (Chang et al. 2015). However, in addition to ethical concerns raised by restraining patients, there are some problematic aspects involved in the pharmacologically focused treatments of the conditions.

Studies have shown that medication-based treatments can be problematic for several reasons. In addition to varying side effects that may contribute to discomfort, which could also be a cause of further confusion for someone already afflicted by Alzheimer’s, research has shown that they may interfere with any additional treatments the person may be taking. This is of particular concern to older adults, as ageing is often accompanied by multiple age-related health problems (Chang et al. 2015). Prescribing Alzheimer’s patients antidepressants to treat the depression associated with disease may raise further

complications, as studies have shown that their long-term use may lead to tardive dysphoria (Ali 2015). Due to concerns such as these, the World Health Organisation (WHO) has called for further research into non-invasive, non-pharmacological interventions for several health conditions, many of which are associated with Alzheimer’s disease, often highlighting music therapy as a viable option worthy of more attention (World Health Organisation 2005).

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Since at the time of writing the disease is incurable and increasingly common, music therapy is noted to be a cost-effective and stimulating way to treat its accompanying

neuropsychiatric symptoms and improve the quality of life of the patients, consequently relieving some of the burden placed on family members and caregivers (Gernder 2005, Chang et al. 2015).

Even though it is generally recognised as beneficial, music therapy is difficult to define. While the use of musical activities in healing, medicinal and therapeutic contexts can be traced back to antiquity and in many cross-cultural settings, the formalisation of the practice of music therapy as it is known today is very much a product of the twentieth century (Davis & Hadley 2017). Sporadically used in mostly experimental settings as an alternative to harsh and sometimes cruel treatments for people with disabilities in the 1800s, the following century saw a proliferation in music being applied to a variety of therapeutic contexts, as well as the foundation of the first organisation devoted to the practice, the National Society of Music Therapeutics in the USA in 1903 (Davis & Hadley 2017). The second half of the twentieth century showed an increase of support coming from medical professionals, the foundation of several international schools and organisations devoted to music therapy and the discipline’s beginnings as an evidence-based practice (Davis & Hadley 2017, Wheeler 2017). Music therapy is an incredibly diverse practice, varying from country to country in terms of methodology and certification. Many countries have their own national professional bodies responsible for certification, licensure and regulation, such as the American Music Therapy Association (AMTA) or the British

Association for Music Therapy (BAMT). In addition to using different methodologies, these organisations tend to even use different definitions of music therapy. Music therapists may also use a broader approach than strictly music based, such as in New York State where many of them are also licensed creative arts therapists. Some also work as part of a creative arts team alongside art, dance/movement or drama therapists. Furthermore, in some countries the practice has not yet been governmentally recognised, meaning that anyone can describe themselves as music therapists without prior training (Wheeler 2017). There are also other professionals who use music for therapeutic purposes, such as educators, caregivers and musicians working in association with specific community projects. In order

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developing and promoting the practice globally, the World Federation for Music Therapy (WFMT) was founded in 1985 and holds the World Congress of Music Therapy every three years, engaging professionals and experts in related professions to share ideas, experiences, trends and research outcomes. According to the WFMT, music therapy is defined as “the professional use of music and its elements as an intervention in medical, educational, and everyday environments with individuals, groups, families, or communities who seek to optimize their quality of life and improve their physical, social, communicative, emotional, intellectual, and spiritual health and wellbeing. Research, practice, education, and clinical training in music therapy are based on professional standards according to cultural, social, and political contexts” (“About WFMT” 2017).

While music therapy is often listed as beneficial when treating Alzheimer’s patients (e.g. Ali 2015), research in the discipline is often dismissed as “anecdotal” and “unscientific” (for example, see Chang et al. 2015). While there has been a noticeable increase in rigour in music therapy research in the past two decades, previous and current research failing to meet such standards places the practice in a difficult position when it comes to proving its scientific validity. Music therapy research focused on several different target populations including Alzheimer’s patients has noted high research dropout rates, which may be attributed to families of research subjects failing to see the potential of the treatment (Porter et al. 2016, Chang et al. 2015). This can have consequences such as difficulties regarding the field gaining public acceptance and research funding, as well as the practice’s incorporation into different national healthcare services. Even though national music therapy organisations are found throughout the world and idiographic studies have shown that it is cost-effective and improves quality of life for Alzheimer’s patients and their

caregivers, it is relatively uncommon for them to be fully incorporated into wider healthcare on an institutional level and are typically only turned to as a last resort (DeNora 2000, Gernder 2005, Wheeler 2017).

The objective of this thesis is twofold. The first aim is to address several of the recurring problems found not only in music therapy research, but in the way that it is perceived by other research fields. The second aim is to propose future directions for approaching music

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therapy research concerning Alzheimer’s disease. The focus on Alzheimer’s in particular is due to the importance of understanding ways to improve the conditions of those who suffer from the disease. In addition to helping those who are already afflicted by the disease, there is also the pressing urgency of those numbers increasing every year with an ageing

population. A 2011 review conducted by Deborah Barnes and Kristine Yaffe claimed that at the time approximately 33.9 million people worldwide suffered from Alzheimer’s disease and that its prevalence is expected to triple over the next 40 years (Barnes & Yaffe 2011) In addition to the patients, the disease also affects their families, caregivers and even the wider community, straining personal relationships and entailing public expenses for

healthcare systems as patients’ conditions worsen and they become increasingly dependent on others (Ali 2015). Following the WHO’s previously mentioned recommendations

concerning both quality of life and the need for less invasive medical practices, improving music therapy’s acceptability with both scientific communities and the general public could not only help those suffering from Alzheimer’s, but could also be useful for further research concerning other conditions. Two techniques that will be addressed are microanalysis and metanalysis, broadly defined for this thesis in a music therapy context as the detailed study of individual patients’ sessions and a wider comparison of identical or similar studies, respectively. Even though the proposed framework will be specifically for music therapy research concerning Alzheimer’s disease, the theoretical foundations of combining microanalysis and metanalysis, and consequently qualitative and quantitative methods, could provide an important foundation to approach music therapy research in a manner that allows for the nuances of the practice to be taken into consideration while also providing an appropriate amount of rigour required in order to gain scientific validity.

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PART I: PROBLEMS IN AND PERCEPTIONS OF MUSIC THERAPY

RESEARCH

It is important to highlight some of the main problems that keep reoccurring in music therapy research. While some of these may be particularly well-known by now, particularly the “unscientific” nature of much of the research, several of these problems are related to problematic ways that that music is understood by researchers coming from outside of the discipline of music therapy. These two particular points can be at least partly attributed to the academic dichotomy between science and the humanities, with each side specialised in asking different questions and resorting to different methods to answer them.

Common Critiques of Music Therapy Research

As previously stated, music therapy research has often been tenuously received by the wider scientific community, challenging its recognition as a valid form of treatment. Most of the recurring criticisms of the research quality refer to it as quasi-experimental concerning methods, as well as small sample sizes, a propensity for single-subject or single-group studies, and an emphasis on qualitative research. A metanalysis of randomised control studies conducted by Chang et al. at the Taipei Medical University reviewed publications from between 2000 and 2014 concerning the efficacy of music therapy for people with dementia found that out of initial sample of 294 relevant studies, only 10 met their inclusion criteria. This included the following 5 criteria: the use of a randomised control trial (RCT) design according to the criteria of the Cochrane Collaboration, participants comprised of older adults formally diagnosed with dementia assigned to either an experimental music therapy or a control group, evaluation of an intervention targeting disruptive behaviours, anxiety levels, depressive moods and cognitive functioning by using reliable and valid scales, and studies published between January 2000 and February 2014 with sufficient quantitative data to compute an effect size. The other 284 publications were excluded as they consisted of small sample sizes, the omission of quantitative data or control groups, and

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conducted by Vasionyte and Madison (2013), Chang et al.’s is noteworthy for its emphasis on rigour as inclusion criteria. In order to perform their statistical analyses, Chang’s research team actually had to contact several of the authors in order to obtain missing data omitted from the publications (Chang et al. 2015).

Furthermore, many publications not only omit important quantitative data about the research, but even about the therapy sessions themselves. This is less common in more recent research in the field (Gerdner 2005, Wosch & Wigram 2015), but is still common in studies conducted by non-music therapists (Chang et al. 2015). Using the term “music therapy” as a gloss shows an incredible lack of attention to detail to the breadth of schools of thought, practical approaches and techniques that music therapists resort to in order to address the needs of different patients. This glossing approach aligns the practice more with pharmacology. This is also noticeable in the way that the lack of control groups in music therapy research is often perceived. Chang et al.’s exclusion of studies that fail to use control groups, while understandable for the sake of maintaining an important pillar of experimental research, raises questions about how they could hypothetically be created. Unlike in drug trials, it is not as simple to devise a music therapy placebo. While other activities may be prescribed to a control group, such as painting or sports, these are often resorted to or recommended as therapeutic practices in their own right for patients with dementia (Ali 2015). In other words, studying “placebo activities” could also be interpreted as a comparison of different the benefits of different activities rather than the typical drug trial placebo. Further problems with conceptualising music therapy research studies along the lines of drug trials will be addressed in more detail in a later section (see “Reductionist Research Techniques”).

Another noticeable recurring problem is that music therapy research often resorts to fairly old references to develop their theoretical foundations. It is not uncommon to find relatively recent publications or editions featuring references from, for example, the 1970s. (see Schneck 2015). While this does not necessarily mean that their source material is incorrect, it implies that many music therapy researchers may not be following recent developments in medical research.

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Although most of these critiques are valid, others fail to consider the complexity of studying music from a scientific perspective. Concepts of “music” are conditioned by an array of cultural and subjective factors, making it even hard to define (Trehub et al. 2015). The next section will attempt to do so in a manner that has gained considerable traction in academic circles in the twenty years since it was first used and which is particularly relevant to music therapy research.

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The Music in Music Therapy

In his influential book Musicking: The Meaning of Performing and Listening, the musicologist Christopher Small formalised the concept of music as a verb rather than a noun. “To music”, according to Small, is to “take part, in any capacity, in a musical performance, whether by performing, by listening, by rehearsing or practicing, by providing material for performance (what is called composing), or by dancing” (Small 1998: 9). This highlights the action (or actions) involved in producing or experiencing music and reconsidering it in a more processual manner than as reified as an object. “Musicking” is experienced by people in time, physically and mentally embodied, and imagined (Hahn 2007). Many researchers studying music therapy from a non-musically informed academic background tend to fail to take this into account and resort to the dichotomy of “intra-musical” (or “textual”) and “extra-musical” elements. These intra- and extra- textual elements are broadly defined in the Eurogenic classical tradition as either being part of the internal structure of the music (i.e. written on the score or analysable based on the information it contains) or as part of the performative or culturally significant aspects of the music (Cook 2008, Trehub et al. 2015). Trehub et al. highlighted how these so-called “extra-musical” aspects have often been overlooked in music related research (Trehub et al. 2015). This can even be noted in situations where researchers have more academic classical musical backgrounds and fail to consider them (Cook 2008 addresses this in detail). However, Small’s concept of musicking has gained significant traction in music therapy research since it was coined in the late 1990s (e.g. see Stige et al. 2016 (eds.), Wosch & Wigram 2015 (eds.)) as well as in

musicology. Nicholas Cook has referred to this increased focus as the “performative turn” in musicological research (Cook 2008).

The false dichotomy between intra- and extra-musical aspects of musicking has also been used to question the validity of music therapy. A reoccurring critique regarding the scientific credibility of music therapy from researchers outside of the field is questioning of if any perceived improvements are attributed to the music or to therapist (Thompson 2015). However, this question fails to consider that the many ways that music therapy may be defined are always based on the musical experience with the therapist and/or the group (if

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the sessions are held in a group setting). In addition to neglecting the relational aspects of the therapeutic process, this perspective assumes a prescriptivist view of the music. Any experienced music therapist understands that treating a patient is not simply a matter of prescribing twenty milligrams of Mozart. In order to be effective, music therapy requires flexibility on the practitioner’s part in the face of the individual needs of each patient. This includes considerations regarding the patient’s musical experience, tastes, and capabilities. A simple but comprehensive way to categorise music therapy is to classify it according to the use of music and the number of patients being treated simultaneously. In broad terms, active music therapy is defined by the patient’s active participation in the music making process and passive (or receptive) music therapy involves the patient experiencing the music rather than producing it. Another important differentiation is between individual and group music therapy, where the therapeutic focus is either on a single patient or where the focus is on benefits originating through the group interactions (Wheeler 2017, Chang et al. 2015).

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Music Therapy Research and Cognitive Science Music Research: Overlaps and

Discontinuities

Music therapy research tends to lean heavily on other fields focused on music. An example of this that has already been touched upon is Small’s concept of “musicking”, informed by ethnomusicological research and used as a theoretical framework to encompass any musical activity (Small 1998). Music therapy treatments to help with difficulties in organising

movements that occur due to Parkinson’s disease and to promote language skills in children with special needs are founded on research based on studies in music cognition exploring rhythm and the relations between music and language, respectively (Wheeler 2017). Alzheimer’s disease related research in the field is largely based on developments in the study of the relationships between music and memory and music and neuroplasticity, which is in turn indebted to technological developments in neuroimaging technology over the past few decades.

An important difference to highlight between music therapy research and cognitive musicology is that the former is a therapeutic practice frequently categorised as an allied health profession and not an “ology” in the same sense as the latter. Although this may seem like a fairly obvious, empty statement about semantics, it reveals the main differences between the objectives of the two disciplines. While music therapy research focuses on how to use music within a therapeutic context to achieve specific treatment goals, cognitive musicology is focused on gaining a scientific understanding of how and why music “works” and affects us. In his international bestseller This Is Your Brain On Music, neuroscientist Daniel Levitin skims over the topic of music listening and music therapy as a means to help people overcome an array of physical and psychological problems in order to “return to a more fruitful line of enquiry regarding musical taste” (Levitin 2008: 227) after stating that the he found the “whole hubbub” about the infamous hype surrounding the Mozart effect “a bit offensive” because of the implication that “music should not be studied in and of itself, or for its own right, but only if it could help people to do better, ‘more important’ things” (Levitin 2008: 226). While these statements are not necessarily intended to deride music therapy, they clearly highlight the different focuses of the two fields at hand. Even

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though both study music, music cognition researchers and music therapy researchers differ in how they approach the subject. In order to understand how music “works”, cognition researchers largely resort to studying causality. This is largely done through randomised control trials, or RCTs. In a randomised control trial, the experiment’s participants are divided into two groups as an attempt to eliminate the effect of confounding factors through randomisation. While they do not strictly prove causality, well conducted RCTs are used to provide strong evidence (Okasha 2016). Music therapy research, on the other hand, is primarily focused on obtaining results that practitioners can apply for specific

goal-oriented therapeutic purposes (Wheeler 2017). This is typically done through both RCTs and qualitative idiographic studies, although in medical research the RCT is usually regarded as the “gold standard” and the evidence-based medicine movement often argues that it is the only way to determine when a treatment is causally effective (Okasha 2016). However, this position of only RCTs qualifying as evidence has faced criticism and will be discussed in more detail in a later section (see “Reductionist Research Approaches”).

In the wake of the previously discussed performative turn in musicology (see “The Music in Music Therapy”), there has been a greater emphasis on considering how to approach music as an academic research subject. It is perhaps safe to say that the majority of people who enter the field of music cognition, both in the past and present, come from a Eurogenic “classically informed” music education background, as it has been the cornerstone of academia. This can create a limited scope for conceptualising music. Ethnomusicological research has played an important role in informing researchers about the sheer diversity of music and challenging preconceptions that may emerge from training in only one tradition. Even the approach of studying music processing in a clinical setting has been called into question as the importance of context and extra-textual musical elements have been highlighted in their significance (Trehub et al. 2015)

As previously mentioned, research into trying to unravel the underlying mechanisms for music processing have definitely not been unfruitful, but more often than not result in more questions rather than answers. This is because trying to understand music strictly from a reductionist perspective brings attention to the influence of “external” factors that need to be considered. Individual differences in musical experience and listening habits, as well as

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the role of enculturation, have all been noted as factors that complicate matters when trying to create a replicable experiment with any given sample.

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Reductionist Research Approaches

Although the term “reductionism” is often used in a critical manner, it is a crucial part of scientific reasoning (Okasha 2016). It is at the core of any quantitative research method. The theoretical foundations are heavily indebted to the seventeenth century fascination with clockwork and Isaac Newton’s influential work in reducing the physical world to its

mathematical underpinnings with his work Mathematical Principles of Natural Philosophy, first published in 1687 (Midgley 2011, Okasha 2016). Since then, many disciplines have attempted to emulate this mechanistic approach in order to gain scientific credibility. Currently, a very common approach in understanding cognition is to compare the brain to a computer in order to attempt to discover and describe the mechanisms underlying its processes. The “brain as computer” metaphor is pervasive in research concerning memory, perception and in cognitive research in order to explain neural processing. While it may be of use to conceptualise the brain, it is important to be wary of leaning too heavily on metaphors such as this. Throughout history, there has been a recurring trend to use contemporary technologies to explain human physical and mental functioning, such as hydraulic engineering in the third century BCE, mechanical gears and springs in the 1500s and the telegram in the mid-1800s (Zarkadakis 2015. Epstein 2016). Even much of the terminology in neuroscience such as “process”, “network”, “encode” and “input” is also widespread in computer science (Passingham 2016). At the time of writing it appears that computational conceptualisations are being challenged, or at least supplemented, by developments in the field of artificial intelligence, namely deep learning. Deep learning is a form of machine learning inspired by biological systems (as well as by insights in

mathematics of cost optimisation) that has gone onto revolutionise the field of artificial intelligence and is being now being related to theories about human cognition (Marblestone et al. 2016). While this new approach challenges simplistic interpretations of neural

networking, it continues the trend of technological understandings of human cognition and may rely too heavily on the principles of cost optimisation.

There are also other more specific recurring problematic assumptions in music therapy research that need to be addressed. As previously stated, the RCT is widely considered a

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cornerstone of the scientific study. In health-related research, it is particularly prevalent in pharmacological research. This is due to the biochemical understanding of humans

functioning and the assumption that chemicals work on all humans in an identical manner. Since research on pharmaceuticals may entail serious risks for the participants, experiments typically use very small sample sizes to reduce the number of people who may be affected by potential negative side effects. However, further studies have noted several problems with this universalist perspective on human biochemistry. As previously mentioned, medication may interfere with other drug-based treatments for different conditions that patients may be resorting to, a common problem amongst elderly Alzheimer’s patients (Chang et al. 2015, Ali 2015). Furthermore, results from pharmacological studies on adult populations do not always translate well to other demographics. For example, medication used for depression and anxiety designed for and tested on adults may be detrimental on developing adolescents (Porter et al. 2016). There is little research on the effects of many types of medication prescribed to treat some of the neuropsychiatric symptoms of Alzheimer’s disease on the elderly (Chang et al. 2015). Studies have even shown that substances affect men and women differently, sometimes having little to no effect on one sex (Jacobson 2014).

Another legacy of reductionism in both academic and public discourse is the prominence of dichotomised stances concerning topics. This critique of a mechanical understanding of the brain is not intended to dismiss quantitative approaches in scientific research in favour of a fervent embrace of qualitative methods. It also does not intend to justify all prior music therapy research methods.

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Summary of Part I

This first section some important recurring problems in and perceptions of music therapy research that may act as barriers of sorts to the practice’s widespread acceptance as a viable treatment for patients suffering from Alzheimer’s disease. They are mostly due to music therapy not conforming to reductionist research practices, namely the randomised control trial, and resorting to qualitative studies and a tendency to either ignore

quantitative data or to use it somewhat carelessly. However, a closer examination of the complexities of studying musicking highlights the importance of analysing action and perception as well as the relational aspects of the process rather than simply taking the topic for granted and viewing “music” as some sort of monolith.

This statement is not intended to dismiss all prior research or to claim that any attempts to study music as a “whole” is futile, but instead aims to shed light on the importance of a nuanced approach when considering the topic. It is also important to differentiate the study of music cognition from music therapy research as two distinct fields with their own

objectives and methodologies, although the latter obviously leans heavily on the former for its theoretical foundations. Part II is dedicated to exploring recent developments in music therapy research that have become increasingly popular in the field, as well as future directions to consider for their application to the study of the practice’s effects on Alzheimer’s disease.

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PART II: NEW APPROACHES AND FUTURE DIRECTIONS

In spite of the many problems that have been addressed in both music therapy research and the way it has often been perceived by the wider scientific community, the field has

experienced many important developments in the last couple of decades. An increased focus on rigour and new opportunities created by advances in neuroimaging technology have provided considerable insight into music cognition and music therapy research. Technological developments have also facilitated the possibilities for international

collaboration, as well as data collection and processing. Furthermore, as Alzheimer’s disease has been increasing around the world, there has been considerable research into the

condition to understand its pathology and to attempt to discover a cure (Ali 2015). Part II of this thesis will focus on profiling Alzheimer’s disease and address potential future directions for music therapy research to pursue regarding the topic.

These are largely based on steering away from RCTs and combining other methods that have been gaining considerable traction in the field in recent years, namely idiographic studies, microanalyses and metanalyses. As previously stated, idiographic studies focus on the detailed account of individual patients rather than a group intended to represent a whole demographic, microanalyses in a music therapy context provide detailed information about individual sessions, and metanalyses use quantitative data from independent studies concerning the same or similar research topics. Combining these different approaches would allow researchers to overcome the limitations of dichotomising studies as qualitative or quantitative, and single-patient- or randomised-group- based. This could allow for

researchers to change metaphorical “lenses”, providing detailed information on a patient-specific level as well as facilitating wider comparisons to study trends and the reliability of specific methods targeted to different needs. Before discussing approaches to music therapy research regarding Alzheimer’s disease in detail, it is important to understand and profile the condition in a way that allows for alternating micro- and macro- lenses that allows to understand it in broadly classifiable terms and highlight its complexity and heterogeneity.

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Profiling Alzheimer’s Disease

The inherent heterogeneity of Alzheimer’s disease makes it a very complex research subject. With different patients displaying different patterns and rates of deterioration, it is

important to keep track of individual differences between people in order to provide appropriate care catered to specific needs and to maintain scientific rigour in any ongoing research, a point that can be overlooked by drug trials assuming a universalist chemical perspective on treatment. Generally, the younger the person is when the disease is noticed, the faster it will progress (Ali 2015).

Alzheimer’s disease affects people differently by affecting different parts of the brain at different rates, with its physiological and pathological evolution not following a set pattern (Ali 2015). Even though it tends to affect most parts of the brain, areas that tend to be particularly affected are the hippocampus, the amygdala and the cerebral cortex. The way that these regions are affected is believed to account for symptoms such as the gradual loss of memory, intellect, skills and the ability to learn, while other regions such as the brainstem may account for motor control and sensory analysis difficulties that become more

pronounced at later stages (Ali 2015). Although individual changes in the brain may vary, researchers have devised different models to profile the deterioration into key stages. There are three particularly prominent models for profiling Alzheimer’s disease into

different stages named according to the number of stages they resort to for categorisation. These are the three-stage, the stage and the seven-stage model. Out of these, the six-stage model is the only one that is based on studying the anatomical changes taking place within the brain, which, while important for providing unique insights into the condition, makes it the least commonly used in care situations (Ali 2015). Although recent research has demonstrated that positron emission topography (PET) scans can detect plaques very effectively and allow for more tailored clinical management for patients with mild cognitive impairment (“Alzheimer’s Diagnosis” 2019), using neuroimaging techniques that involve Alzheimer’s patients being immobile become more difficult to conduct as the condition progresses (Chang et al. 2015). For practical reasons, this proposed research methodology

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will focus on the three-stage and seven-stage models instead. In addition to avoiding a reliance on neuroimaging technology, these two models are the most widely used ones and are specifically designed to cater to the care needs of patients.

The Three-Stage Model

The three-stage model consists of a preclinical stage, a mild cognitive impairment (MCI) stage, and a dementia stage (Ali 2015). In the first stage, which typically lasts from two to four years, there may not even be any signs or symptoms. Beta-amyloid protein

accumulation is considered a major biomarker for this stage, although it is important to note that this phenomenon is not solely associated with Alzheimer’s disease and may not even lead to cognitive decline. Therefore, the staging schema for the preclinical stage consists of asymptomatic cerebral amyloidosis, amyloid positivity with evidence of synaptic dysfunction or early neurodegeneration, and amyloid positivity with evidence of

neurodegeneration with subtle cognitive decline (Ali 2015, Sperling et al. 2011).

The second stage of Alzheimer’s, also known as the middle stage, lasts from two to five years and is characterised by moderate to severe symptoms. These include pervasive and persistent memory loss, impaired ability to learn and retain new information, rambling in speech, unusual reasoning, and confusion regarding events, time and place. The patient is also more likely to become lost, develop a disturbed sleep pattern, and experience mood and behavioural changes, as well as slowness, rigidity and tremors in mobility and

coordination (Ali 2015). At this stage it is also common for caregivers to become involved in helping with more complex tasks and for patients to seek treatments such as cognitive group development programs, multisensory stimulation and behaviour management to cope with symptoms (Austrom & Yu 2009, Ali 2015).

The third stage of the disease is officially known as the dementia due to Alzheimer’s and tends to last between one and three years. By this point the symptoms are usually severe and the patient loses the ability to respond to the environment and to control movement. This is accompanied with a severe to total loss of verbal skills, as well as problems with swallowing, incontinence, illness and extreme alterations in mood and behaviour. Patients are incapable self-care and are reliant on caregivers for constant support, as patients living alone run risks of injuries (from falls, burns, ingesting dangerous substances, etc.), leaving

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Problems related to dementia such as seizures, agitation, sleep disorders and depression at this stage are typically treated with anticonvulsants, sedatives and antidepressants, which may result in side effects contributing to further discomfort and an increased risk of death (Ali 2015, Chang et al. 2015).

The Seven-Stage Model

The most obvious difference between the three-stage and the seven-stage models of Alzheimer’s disease is the number of stages used in the categorisation process. The seven-stage model is more detailed and defines the seven-stages as lacking any major impairment, very mild decline, mild decline, moderate decline, moderately severe decline, severe decline, and very severe decline (Ali 2015). It is important to note that patients do not necessarily go these stages in an orderly manner, particularly when it comes to the later ones, and that they are intended to be used as a diagnostic tool rather than as a predictive one.

The first stage, as the name suggests, is characterised by a lack of any major noticeable deterioration or impairment. The patient does not experience any memory problems and even an interview with a qualified medical professional will not reveal any signs of dementia (Ali 2015). At the second stage of the disease, the patient usually experiences memory lapses and difficulties in thinking clearly, accomplishing daily tasks and duties such as handling finances. However, dementia signs may still be difficult to detect and symptoms are often mistaken as part of the natural ageing process (Ali 2015).

The third stage, however, is characterised by the symptoms of Alzheimer’s increasing at a pace faster than at rates simply associated with ageing. This is typically associated with the temporal lobe being affected resulting in memory and language impairments (Ali 2015). People at this stage may also display difficulties remembering names and words (particularly new names), carrying out routine tasks, and writing coherently. Planning and organisational skills also tend to suffer alongside the forgetfulness, leading many people to turn to

reminders such as calendars and checklists. Difficulties in concentration and memory may be detected by a medical professional (Ali 2015).

In the fourth stage, marked by moderate cognitive disability, impairments are clearly detectable by a thorough examination (Ali 2015). They are particularly noticeable regarding remembering personal experiences and recent events, managing and planning for tasks

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such as paying bills, and even mental tasks such as counting backwards (Ali 2015). People usually become socially withdrawn at this stage and avoid mentally challenging tasks. The fifth stage displays moderately severe cognitive problems and patients require daily care. Memory function and cognitive thinking are seriously affected, creating difficulties with remembering telephone numbers, addresses, date of birth, the time of day or the year, and daily living tasks such as changing clothes, bathing, toileting and taking medicine. In these later stages of the seven-stage model it may be necessary to get clothes that cannot easily be removed, as some patients tend to undress at inappropriate times (Ali 2015, Chang et al. 2016). Patients are encouraged to maintain a certain sense of routine in order to stay as independent as possible, although supervision is required to ensure a safe environment. The sixth stage is a critical one, marking the transition from moderate to severe Alzheimer’s disease. Occurring problems described in the fifth stage are exasperated and patients require daily care with regular activities due to major memory gaps and severe cognitive decline. They may also forget the names of their spouse and children, or confuse the caregiver with the spouse. Some people may also show difficulties distinguishing faces or speaking and understanding the speech of others. Additional symptoms may include the disruption of normal sleep patterns, compulsive repetitive behaviour, hallucinations, delusions, and severe personality and behavioural changes such as aggressive or anxious behaviours (Ali 2015, Wolinsky et al. 2018). Caregivers are encouraged to keep patients physically and mentally fit, as well as feeling productive with tasks they are still capable of performing. However, the number of tasks they can do independently will decrease as this stage progresses.

By the seventh stage, the patient displays very severe cognitive issues and is entirely dependent on a caregiver. Central nervous systems show significant deterioration, leading to loss of control of most bodily functions and even organ failure (Ali 2015). Symptoms include incoherent speech, frequent incontinence issues, inability to move around without assistance and impaired swallowing. At this point the head needs to be supported and movement is impaired by muscle contractures and joint deformity. Due to resulting breathing problems, pneumonia is the most cause of death at this stage, although other causes include stroke, heart disease, cancer and bedsores (Ali 2015). However, patients can still live for year with sufficient care and life support.

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Combining the Two Models for Research

The overlap between these two models is of use when considering the proposed

micro/macro research approach to study individual patients within the context of a wider sample. Since the seven-stage model of Alzheimer’s is more detailed version of the three-stage one, it can be useful to track the deterioration of different participants and cater to their specific needs as the disease progresses. However, the heterogeneity of the condition means that the different stages are not universal. The three-stage model, although more general, can be seen as more universal. By also resorting to a time-based approach for tracking the condition, it creates another beneficial variable for comparing different patients within the same sample. In sum, this thesis proposes using the three-stage model to

categorise patients for metanalysis purposes and the seven-stage model to tend to

individual needs and to allow for further case-specific microanalysis. A proposed method for combing them can be found below in table 1.

Table 1 - Combining Alzheimer’s Models for Research

Three-Stage Model Seven-Stage Model

1. Preclinical Stage 1. No Cognitive Impairment 2. Mild Cognitive Impairment Stage 2. Very Mild Cognitive Problems

3. Mild, Noticeable Cognitive Issues

3. Dementia Stage 4. Early Alzheimer’s Disease 5. Moderate Alzheimer’s Disease 6. Moderate to Late-Stage Alzheimer’s 7. Late-Stage Alzheimer’s

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Since the stages of Alzheimer’s disease typically require different treatments, it is important to consider a variety of music therapy approaches and practices to address individual patients’ specific needs. Chang et al.’s metanalysis found that group, individual, active and passive music therapy approaches has different effects on different accompanying

symptoms of dementia such as depression, anxiety and disruptive episodes. These effects were also found to change depending on the severity of the dementia (Chang et al. 2015). By studying the disease progression in detail of patients during research, it may be possible to gain a greater understanding the different effects of music therapy approaches and practices on different symptoms and stages.

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Future Directions

Microanalysis and Metanalysis in Music Therapy Research

Both microanalyses and metanalyses have become increasingly common in music therapy research in recent years. Thomas Wosch and Tony Wigram, exponents of microanalysis in music therapy and editors of an influential book on the topic, define “the specific ‘objects’ in focus in microanalysis should be understood and defined as minimal changes in

relationships or interactions between people or minimal changes in the music and in

dynamic forces” (Wosch & Wigram 2015: 14). Documenting these minimal changes is crucial to capture the nuance of individual sessions and the ongoing relationship between the therapist and the patient. This is crucial for complex topics such as Alzheimer’s disease. For example, Ethnogeriatric specialist and researcher Linda Gerdner’s idiographic study of an Alzheimer’s patient, while not strictly “microanalytical” (at least concerning the amount of detail provided in the published article about the individual therapy sessions), provides a thorough account of the effects of the sessions on the patient, the family and caregivers as her condition progresses (Gerdner 2005). A potential model to consider for recording detailed information about music therapy sessions is based on Ulla Holck’s ethnographic descriptive approach to video microanalysis. This consists of using video technology to record the therapeutic interaction from different angles followed by detailed transcriptions of the music, as well as the gestural and facial expressions, taking place between the

therapist and the patient in relation to time (Holck 2015). Using a source material as rich as video provides important musical, social and temporal information in succession, which is crucial for understanding the complexity of musicking and the developments of individual patients in a research context.

Metanalytical approaches have been increasingly common in medical research and clinical practice in the past few decades as a means to summarise data for clinicians, study trends and determine reliability of specific practices (Moore 2012). Metanalysis is a statistical procedure that involves quantitatively pooling data from a group of independent studies that have examined the same or similar clinical problems using the same or similar clinical methods. (Egger et al. 1997, Moore 2012). In addition to improve the overall power of each

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study, metanalyses also improve precision and consequently reliability, as well as allowing the reviewer to answer questions not posed by the individual studies (Higgins & Green 2011, Moore 2012). For example, Chang et al.’s previously mentioned 2015 metanalysis allowed the reviewers to compare different music therapy approaches (i.e.: active or passive and group or individual) for varying degrees of dementia severity (Chang et al. 2015).

Collaborative Data Collection and Analysis

As stated earlier, recent technological developments have allowed for greater ease of collaboration and data-sharing amongst researchers. While music therapy research contains personal information about patients, raising ethical concerns that must be considered, data-sharing possibilities create the potential for large-scale, interdisciplinary projects, adding further rigour to studies. In addition to data concerning the music therapy sessions, it is important to track the patients’ progress of symptoms during the duration of the study. This would ideally be conducted by medical professionals such as caregivers or physicians, as they should have a stronger grasp on the progression of Alzheimer’s disease than a qualified music therapist. An interdisciplinary team is important for a topic with several layers of complexity such as this one in order to reduce the occurrence of research biases or blind spots interfering with the data collection process. Furthermore, institutionalised patients are frequently assessed to a high standard (Ali 2015). This could also theoretically allow for a creation of a control group for research projects. Studying at least two people in the same care facility by the same assessor could minimise the effects of several other potential variables, namely environmental factors.

Other factors to consider that become available with large scale projects are their duration and sample size. Even though many studies concerning Alzheimer’s may last over ten years and feature hundreds of participants in order to account for the variety of the condition and the different rates of deterioration that victims experience (. ), most music therapy studies concerning dementia resort to small samples and short timeframes (e.g.: Raglio et al. 2008). This proposal recommends following the lead of the former rather than the latter due to the nature of Alzheimer’s disease as well as allowing the opportunity to examine

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a third party (in addition to music therapists and medical professionals collecting individual patient data) to analyse quantitative data from multiple studies. This is a norm of sorts in metanalyses, as they are typically separate studies in their own right (Moore 2012), and in hypothetical future studies pursuing a combined micro-/macro- approach it would be worthwhile to consider forming this third, interdisciplinary metanalytical party to assess the data for validity and credibility, as well as to use quantifiable information for statistical analyses. A broad outline for this interdisciplinary research concept can be found summarised in table 2 below.

Table 2 –Approaching Interdisciplinary Music Therapy Research for Alzheimer’s Disease

Music Therapy Sessions Alzheimer’s Disease Profiling

Data Analysis and Interpretation

Microanalysis conducted by music therapists

Tracking developments in patients and categorising them according to the three-stage and the seven-stage models conducted by healthcare professionals

Metanalysis conducted by an interdisciplinary team to compare patients and observe trends

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Summary of Part II

In order to overcome some of the problems that music therapy research has faced in the past concerning scientific validity, there has been an increased focus on rigour in recent years. Two techniques in particular that have become increasingly common are

microanalysis, focused on detailed recording and interpretation of therapy sessions, and metanalysis, focused on the quantitative analysis of the same or similar studies. While it has been previously suggested that music therapists and researchers should perform

metanalyses of microanalyses (Wosch & Wigram 2015), to the best of my knowledge this type of study has not yet been conducted yet. Its potential, however, would be tremendous for the field by allowing for detailed qualitative accounts of research subjects while also allowing for quantitative wider cross-comparisons to others. When addressing Alzheimer’s disease specifically, many music therapy publications fail to detail the condition of the research subjects even though the condition is complex and heterogenous (although it is important to note that this has been improving in the past two decades). A collaborative approach with other researchers dedicated to profiling changes in individual patients as the disease progresses could provide even greater insight into ways to study, and consequently optimise, treatments for different requirements faced by individuals as their needs change. Profiling the disease could also be conducted on both a micro- and macro- scale by

combining the seven-stage model with the broader three-stage model for assessing patients’ conditions to facilitate detailed accounts and compare wider trends.

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CONCLUSION

While music therapy has been gaining support, there are still some barriers in its way in order to be truly integrated into national healthcare systems around the world. This is largely due to difficulties in defining the practice, which may change from country to country, and a recurring trend for music therapy research to be regarding as ambiguous or anecdotal by the wider scientific community. While this is in part because of a complicated history of scientifically dubious methods and approaches (which have come under criticism in the field in the past few decades), this is also due to simplistic understandings of music as a research subject and a therapeutic “tool”. Concepts of music, particularly outside of music-related disciplines, have often failed to neglect the complex social, relational and personal aspects of the activity and expected it to work in a more universalist, drug-like manner. New research techniques in music therapy research have included microanalysis to account for the complex qualitative aspects of the practice and metanalysis in order to compare patients and studies in a manner that still meets scientific standards of providing quantitative information to support any findings. Part II of this thesis explored future

directions and possibilities for combing these approaches in an interdisciplinary approach to address the complexity of attempting to understand the practice with a focus on

Alzheimer’s disease, an incredibly nuanced subject matter in its own right. Since Alzheimer’s disease is increasingly steadily around the world and is expected to continue to do so for at least the next few decades, it is worth considering a large-scale music therapy research project. Music therapy is consistently noted as a relatively cost-efficient treatment for Alzheimer’s disease, which is a point that should be highlighted in favour of supporting such studies. Furthermore, the risks for the patients’ lives are significantly lower than, for

example, drug trials involving similarly large numbers of research subjects.

One barrier that conducting studies of this magnitude may face is feasibility. Large-scale collaborative projects focused on such detailed rigour require considerable amounts of personnel and planning in order to be consistent and run efficiently. Furthermore, in order to balance the needs for standardisation of scientific measurements and flexibility in the face of individual patients’ needs, it is crucial that such studies resort to high degrees of

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rigour when collecting qualitative data and also agree on a specific protocol for collecting, categorising and managing quantitative data. If such details are established early on and enforced throughout, it should be possible to devise an approach that successfully allows for rigour in both micro- and macro- approaches without comprising one in favour of the other. The proposed interdisciplinary approach allows for specialists to play to their

strengths when collecting data concerning the music therapy sessions and patients’ ongoing condition, as well as including a specific metanalysis team responsible for ensuring that standards are maintained during these important early stages and are maintained throughout the duration of the study.

At the time of writing, there appear to be no such projects in music therapy under way. The conceptual framework in the field in not necessarily unique, as Wosch and Wigram have previously ruminated on the potential for comparing and contrasting microanalytical studies in music therapy research (Wosch & Wigram 2015). However, this thesis proposes a wider, interdisciplinary scope to favour the strengths and to overcome the shortcomings of different fields needed to create a detailed, multifaceted account of music therapy and Alzheimer’s disease with an emphasis on scientific rigour. Music therapy research should highlight and even celebrate its nuanced approach to individual needs, which is particularly useful to address the complexity of Alzheimer’s disease. Several studies in Alzheimer’s disease research take this complexity into account by covering wide timespans and including large numbers of participants to allow for a nuanced approach (Ali 2015). Since the disease has no known cure, cost-effective treatments such as music therapy that help improve the quality of life of those afflicted by the condition should also be studied more in depth to provide them with better care during this final phase of their lives.

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