Today is European Music Therapy Day. You can help me celebrate by bailing me out of my student loans. Here, I have said it. Shameful but liberating.

How to and why I just don’t go get a job. Or directly.

Keynote presentation by Alisa Apreleva, MT-BC, NMT, on MUSIC THERAPY AS AN INTEGRATED METHOD OF PSYCHO-EMOTIONAL AND COGNITIVE SUPPORT IN MULTIDISCIPLINARY ALS CARE at II Congress on Mental Health in Moscow, Russia, 5-7 October 2018.

Abstract:

MUSIC THERAPY AS AN INTEGRATED METHOD OF PSYCHO-EMOTIONAL AND COGNITIVE SUPPORT IN MULTIDISCIPLINARY ALS CARE

ALISA APRELEVA, MT-BC, NMT, PHD RESEARCHER AT ANGLIA RUSKIN UNIVERSITY, CAMBRIDGE, UK, ALISA.APRELEVA@PGR.ANGLIA.AC.UK

MULTIDISCIPLINARY TEAM APPROACH IS RECOMMENDED TO MANAGE THE COMPLEX, CONSTANTLY CHANGING PSHYCHOLOGICAL AND PHYSICAL NEEDS OF PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS. MUSIC THERAPY, AS AN INTEGRATED TREATMENT MODALITY, CARRIES POTENTIAL FOR SUPPORTIVE REHABILITATION OF PERSONS WITH ALS. SCIENTIFIC AND CLINICAL EVIDENCE VALIDATE INCLUSION OF A MUSIC THERAPIST INTO MULTIDISCIPLINARY ALS CARE STARTING EARLY IN THE DISEASE COURSE. Keywords: ALS, FTD, MDT, music therapy, rehabilitation, neurology

Non-motor symptoms in ALS

Amyotrophic lateral sclerosis (ALS) is a group of rapidly progressive fatal neurological diseases involving the brain and spinal cord. ALS affects over 400,000 of the world’s population and kills over 100,000 every year. At least 90% of ALS cases are considered sporadic, which means the disease seems to occur at random with no clearly associated risk factors and no family history of the disease [1]. Clinical presentation of ALS is phenotypically heterogeneous and depends on the type of onset: limb onset is the most common and the first symptoms include compromised gait and manual dexterity; bulbar-onset ALS patients first experience the symptoms in head and neck region such as slurred speech or difficulty swallowing; there are also rare truncal-abdominal (axial) and respiratory onsets.

Whilst in the past ALS was considered distinctly a disorder of the motor system, current evidence suggests that some cognitive (ALSci) or behavioural (ALSbi) impairment occurs in up to 50% of cases, and co-morbid dementia (ALS-FTD) occurs in approximately 14% of patients with a new diagnosis of ALS [2]. The notion that “pure” ALS and “pure” FTD may present two extremes of one disease continuum [3] is reinforced by identification of transactive response DNA‐binding protein 43 (TDP‐43) as a major pathological substrate underlying both diseases [4]. ALSci and ALS-FTD patients are more severely impaired in executive function, attention, language and memory than the cognitively intact ALS patients. ALS patients with frontotemporal syndrome also had shorter survival times than those without cognitive or behavioural impairment [5]. Cognitive impairment has a potential to influence the treatment and equipment needs of persons with ALS (PALS) and to impede their safety and medical decision making; emotional perception deficits may lead to impaired relationship with caregivers [6]. Lack of motivation was found to be one most prominent behavioural change in PALS, and disinhibition and impulsivity were found to be particularly stressful for caregivers of people with ALS (CALS) [7]. Emotional lability (pseudobulbar affect), a symptom frequently correlated with bulbar involvement in ALS, may also be confusing and disruptive, especially when communicating with those who are not aware of the nature of the problem [8].

Although there is no consensus regarding the real morbidity of depression and anxiety in ALS [9], [10], it is currently believed that depression is less prevalent in PALS than estimated by caregivers and healthy people [11]. High level of anxiety is often present in PALS during the diagnostic phase and the earlier period after the diagnosis [12]. Later, weakening of the respiratory function and adherence to NIV become the leading causes of anxiety [13], [14].

Music therapy in multidisciplinary model of ALS care

PALS have multiple and complex needs. In addition to many physical symptoms such as gradual loss of motor functions, spasticity, fasciculations, dyspnoea, dysphagia, dystussia, dysarthria and pain, and overall emotional load of dealing with a devastating disease, cognitive and behavioural changes experienced by PALS present additional difficulties for patients and families. The National Institute for Health and Care Excellence (UK) guideline [NG42] suggests coordinated care for people with ALS, using a clinic based, specialist ALS multidisciplinary team approach. American Academy of Neurology recommends MDT model of care where patients are seen by a comprehensive team of health care professionals who each focus on specific health domains including walking, breathing, speaking, eating, activities of daily living, and psychosocial needs during one clinical visit [15]. Such team often includes a physician, physical therapist, occupational therapist, speech language pathologist, respiratory therapist, nurse coordinator, and social worker. Additional specialists, such as nutritionists, pulmonologists, gastroenterologists, assistive technology experts, psychologists, palliative care providers, chaplain or priests, may also be present [16]. Multidisciplinary ALS care has been shown to increase survival of PALS and to improve their mental QoL [17].

Music therapy (MT) is the clinical use of music and its elements to accomplish individualized health goals within a therapeutic relationship. Music therapists are allied health professionals who hold a degree and certification in music therapy, have theoretical and practical knowledge of music, human psychology and physiology, and work closely with a multidisciplinary team to provide individualized, evidence-based, problem-oriented treatment for every clinical situation. Growth of scientific knowledge about music perception and production and the effects of these on nonmusical brain and behavior functions in the recent decades enabled music therapists to develop effective clinical techniques to treat cognitive, sensory, and motor dysfunctions that come from human neurologic diseases and allowed for successful application of music therapy principles in neurorehabilitation [18].

Currently music therapists mostly work with PALS in the end of life, as a part of hospice care at the time when motor functions are mostly lost and natural communication is limited. There is evidence that MT may increase comfort and relaxation, as well as reduce anxiety for terminally ill [19], [20], and music listening may have a beneficial effect on heart rate, respiratory rate, and anxiety in mechanically ventilated patients [21]. Little research has been done to understand the effects of MT interventions conducted with patients at earlier stages of ALS. MT technique of music assisted relaxation was found beneficial for psychological wellbeing of PALS during NIV use [22], as well as for increasing communication, improving quality of life and decreasing the physical symptoms of the disease for ALS patients during hospital stay [23]. No published research addressing the use of music therapy techniques for neurorehabilitation (e.g. supporting motor, cognitive, respiratory, swallowing, speech functions of PALS) has been found, even though empirical evidence and research with other clinical populations [24], [25], [26], [27], [28], [29] suggest that such interventions may be beneficial. MT has been shown effective for managing and treating behavioural and psychiatric symptoms of people with non-ALS FTD [30], [31].

In the absence of a cure, more rehabilitation options have to be considered for PALS [32], enabling them to reach their fullest potential, delaying disease progression and prolonging lifespan [16]. Professionally trained music therapists are well equipped to provide symptomatic care for people with neurodegenerative diseases [33], adapting to increasing and changing disability of each patient as the disease progresses, whilst maintaining and developing trusting therapeutic relationship established early in the disease course. These considerations provide a strong basis for inclusion of a music therapist into MDT model of ALS care.

Music therapy at ALS Centre Moscow

ALS Centre Moscow is a collaboration between three Moscow hospitals providing home-based multidisciplinary care for PALS and their families since 2012. Approximately 110 ALS patients out of roughly 950 PALS residing in Moscow region are followed by the team. MT was first introduced to the patients of ALS Centre Moscow in 2013. An experimental MT protocol consisting of interchangeable blocks of exercises was developed to address the varying and constantly changing physical, social, communicative, cognitive and spiritual needs of the patients and their families. Two music therapists worked with the patients at the Centre intermittently from 2014 to 2016. In 2017, following the increased demand for service, two specialists formally trained in MT applications for neurological clinical practice were added to ALS Center Moscow MDT. These specialists are regularly referred by the medical team to patients at various stages of the disease progression and work with a wide spectrum of non-physical and physical needs.

Disbelief, grief, anger, confusion, distorted sense of self, and social disconnectedness are common consequences of ALS diagnosis. Evidence from psychosomatic and health psychology research fields demonstrates close bilateral interrelation between mind and body, with emotions affecting cardiovascular and immune system responses and physiological events impacting an individual’s psychological state [34]. MT, in form of song singing, song writing, lyrics substitution, listening to and discussing music, meditating and reminiscing to music, and interactive improvisation, can decrease stress, strengthen the mind-body connection and help PALS to regain coherent self-image. Music assisted relaxation may be used to alleviate anxiety, to ease manifestations of pseudobulbar affect and to provide relief from distressing thoughts.

Overwhelming emotions and co-morbid cognitive and behavioural impairments, especially apathy, may prevent PALS from making timely, informed decisions regarding their treatment, such as use of NIV, gastrostomy or tracheostomy. Whereas PALS in Russia are generally reluctant to accept psychotherapy services, a music therapist is often able to establish a working relationship with patients and, through live music making and meaningful conversation, to increase motivation, enhance mood, decrease apathy and create a safe emotional space – a “container” for the overwhelming feelings and reactions, thus freeing up mental energy and focus necessary for treatment planning and compliance.

Similarly, MT sessions create a psychologically safe environment for PALS and CALS to explore the changing dynamics of their relationship, and the peak experience of cooperative music making provides opportunities for positive socialization and communication. Interactive music improvisation utilizing simple instruments or adaptive music technology may become a way of nonverbal communication, self-expression and playful, though meaningful, relating to others. Other techniques, such as free associative singing [35] and musical life review [36], can facilitate deeper psychotherapeutic work with ALS patients and their families. At the end of life music can carry the five messages of relationship completion: “I forgive you”, “Forgive me”, “Thank you”, “I love you”, “Goodbye” [37].

Though further research is needed to explore the applications of music therapy for physical rehabilitation of PALS, clinical evidence suggests that structured, individualized breathing and vocal exercises have a potential to sustain bulbar and respiratory functions for PALS. Finally, active music making, such as playing simple music instruments to the beat, and moving to music can serve as a form of moderate physical exercise for PALS who are not able to engage into physical therapy program.

__________

Positive feedback from the patients and their families supports our tenet that introducing MT as a supportive modality of multidisciplinary ALS care has a potential to increase quality of life and wellbeing of PALS:

“I feel lighter and happier after we do music” – Patient

“I can relax, I cry less and feel less nervous after a (music therapy) session” – Patient

“Unless I do my (music therapy) exercises, it is difficult for me to start speaking in the morning. I notice that after the exercises speech is easier for me, and my family understand me better” – Patient

“My swallowing improved, I can again take water with my lips and I have almost stopped gagging when I eat – something I constantly experienced in the past“ – Patient

“Music therapy was very important for mom. She always smiled when she spoke about the sessions” – Caregiver

Conclusion

The emerging empirical evidence and limited research suggest that MT should be considered as a supportive treatment in ALS rehabilitation, with the potential to improve function and QoL of the patients across various presentations and stages of the disease. MT interventions tailored to individual clinical needs, preferences and capabilities of PALS can be designed to provide opportunities for psycho-emotional support and counseling, relaxation and sleep facilitation, verbal and nonverbal self-expression and communication, mood enhancement, energy boost and motivation, pain management, improving relationship dynamics, socialization, behavioural and cognitive symptoms management, and, with proper precautions, bulbar and respiratory functions support and moderate physical exercise. MT can also address caregiver’s stress as one of the main factors contributing to the caregiver burden in ALS [7], as well as provide respite care and appease grieving for CALS, including children.

Music engages vast network of regions located in both hemispheres of the brain and shares processing components with other functions, such as those involved in language, movement, reasoning and experiencing emotions [38], [39], [40], [41]. Albeit currently underused, music therapy could be one of the modalities of supportive rehabilitation in ALS [23], potentially providing multiple benefits for PALS and their families. There is a pressing need for continued research and higher levels of evidence for MT applications in multidisciplinary ALS care.

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Abstract for jubilee congress with international participation XX “Davidenkov readings” dedicated to the 125th anniversary of the foundation of the first Russian chair for advanced training of neurologists “MUSIC THERAPY FOR REHABILITATION IN MULTIDISCIPLINARY CARE OF PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS” by Alisa Apreleva, MT-BC, NMT.

MUSIC THERAPY FOR REHABILITATION IN MULTIDISCIPLINARY CARE OF PEOPLE WITH AMYOTROPHIC LATERAL SCLEROSIS

Apreleva A.

Anglia Ruskin University, Cambridge, UK

Aim. In the absence of a curative treatment, more rehabilitation options have to be considered for people with ALS (PALS) (Paganoni et al, 2015). Specialist ALS, multidisciplinary team (MDT) approach to ALS care is recommended by American Academy of Neurology (USA) and National Institute for Health and Care Excellence (UK). We make an argument for inclusion of music therapy into MDT care at early stages of the disease as a supportive modality for rehabilitative treatment of PALS.

Materials and methods. Music therapy (MT) is the clinical use of music and its elements to accomplish individualized health goals within a therapeutic relationship. Music therapist is an allied health professional who is qualified to provide individualized, evidence-based, problem- oriented treatment for a variety of clinical situations. MT techniques to treat cognitive, sensory, and motor dysfunctions that come from human neurologic diseases have been developed, allowing for successful application of MT principles in neurorehabilitation (Thaut, Hömberg, 2016). An overview of international literature on music therapy services for PALS has been conducted. Clinical evidence on MT applications at ALS Moscow Centre (Russia) has been analyzed.

Results and discussion. Research on clinical MT applications for ALS is insufficient (Horne-Thompson & Grocke, 2010). (Petering & McLean, 2001) suggest that MT could contribute to interdisciplinary ALS care. There is anecdotal evidence that MT increases mind- body connection (Lings, 2014), reduces distressing physical symptoms such as dyspnoea and pain, and associated feelings of loneliness, anxiety and sadness for patients with advanced ALS (Forrest, 2002), is “pleasant and restorative” for PALS with tracheostomy and their families (Kondo, 2017), and provides families affected by ALS with opportunities for shared meaningful activities (Schmid, 2016). (Raglio et al, 2016) found that active MT increased communication, improved QoL and decreased the physical symptoms of the disease for PALS during hospital stay. (Davies et al, 2016) report that music-assisted relaxation may be a useful strategy to optimize NIV experience for PALS. We may conclude that, firstly, in most cases, MT is solely available for PALS at the end of life, when natural communication and motor functions are lost or limited. Secondly, there is no evidence for MT being systematically used for rehabilitative support of physical functions, such as gait, limb and core strength, speech, swallow and respiration, even though MT has been shown effective addressing neurorehabilitation goals with various clinical populations (Kim, 2010), (Tamplin. 2008), (Bukowska et al, 2016), whilst research from other disciplines supports our tenet that muscle relaxation and moderate exercise improve physical functioning of PALS (Pinto, Swash and de Carvalho, 2012), (Plowman et al., 2016), (Tabor et al., 2016).

ALS Centre Moscow is a collaboration between three Moscow hospitals providing home- based multidisciplinary ALS care. Two music therapists employed at the Centre are regularly referred by the medical team to patients at all stages of the disease progression and work with a wide spectrum of non-physical and physical needs. Patients of the Centre with early and mid-stage ALS reported that their speech and swallowing improved following MT treatment consisting of structured, individualized breathing and vocal exercises, that MT was motivating and increased their relaxation and improved mood.

Professional music therapists are well qualified to provide symptomatic care for people with neurodegenerative diseases (Magee, 1999). In case of ALS, it appears essential that MT is introduced as a supportive modality early in the disease and is implemented by a music therapist who works closely with MDT, is experienced with ALS population and has sufficient training to address complex, changing needs of PALS, including those of physical rehabilitation. Continued research and higher levels of evidence for MT applications in ALS care are necessitated.

One essential feature of this research is that, from the very start, it has been a true multidisciplinary collaborative project, initiated at the request of a social worker, conducted and supervised by music therapists, advised by neurologists, palliative care specialists, physical therapists and speech language specialists internationally, monitored by visiting nurses and clinical care coordinators. The result is the first study to address music therapy role in physical rehabilitation of persons with ALS.

This also appears to be the first study to systematically look at bulbar and respiratory functions support in ALS.  Swallowing, vocalization and breathing are tightly coordinated, and close relationship exists between these processes, in terms of location and activation of the neurons (Matsuo, 2008). Overall emotional and physical condition of a person has great impact on these processes as well. However, support of these functions in persons with ALS has been traditionally disunited and apportioned between various medical and allied professionals, such as speech language therapist, nutritionist, physical therapist, ENT (ear, nose and throat) specialist, etc. Though specialist expertise is essential for the deep insight into the nature of each function, this separation may be disadvantageous from standpoint of integrative patient care. Drawing from the wealth of expert knowledge and supported by multidisciplinary collaboration, a music therapist who, by professional standards, has training in vocal technique, improvisation, as well as basic knowledge of anatomy, physiology, neurology and psychology, may be in the unique position to provide a crosscutting outlook for bulbar and respiratory support in ALS.

This research serves an immediate purpose of addressing the need for continued scientific inquiry to understand the role of exercise in supporting bulbar and respiratory functions of persons with ALS (Plowman, 2015) and providing a foundation for higher levels of evidence (K. Hanson et al., 2011) – in particular, delivering the necessary feasibility data for a future randomized clinical trial.  The importance of rigorous clinical trials to support alternative ALS treatments has been emphasized by Motor Neurone Disease Association, citing the dual impact of ensuring ethical medical care, as well as protecting patients from the onslaught of pseudoscientific, often harmful practices.

It is worth mentioning that, as of today, this is the only music therapy clinical research study taking place in Russia that is registered with ClinicalTrials.Gov. ClinicalTrials.Gov is a database of privately and publicly funded clinical studies conducted around the world, an open resource provided by U.S. National Library of Medicine. In the time when music therapy field is yet shaping in Russia, this is an important advocacy event, exemplifying a globally recognized standard for professional practice.

It also appears that currently this is the only collaborative music therapy research between United Kingdom and Russia. It is an important memento of the plain fact that, at the times of political and economic tension, scientific collaboration between the countries can still occur, potentially improving health outcomes of people with amyotrophic lateral sclerosis across the borders.