MUSIC.ALS

SOUND SUPPORT FOR LIVES AFFECTED BY ALS

SOUND SUPPORT FOR LIVES AFFECTED BY ALS

Science

Table of Contents

Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons With Early and Mid-Stage Amyotrophic Lateral Sclerosis / Motor Neurone Disease – poster

Research poster – Society for Research in Rehabilitation Conference 2024, Cicely Saunders Institute, King’s College London.


Music Therapy for ALS / MND, research poster
The research poster is highlighting the importance of live singing and music-based exercises to support speech, breathing, swallowing and cough in people with MND / ALS.
 
 

Music.ALS: Clinical Perspectives on a Home-Based Music Therapy Treatment to Improve Breathing, Speech, Swallowing and Cough of Persons with ALS (MND)

Two case studies – Medical Research Archives; Apreleva et al, 2023

Two case studies from a larger, published ALS study were selected for this new report to provide an insight into the practical aspects of music therapy treatment. The home-based protocol was designed to sustain bulbar and respiratory functions of persons with early and mid-stage onset. It was delivered to all participants twice-weekly for six weeks as a part of a 16-week ABA mixed methods study. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation, personal impressions) and 34 biomedical outcome parameters for bulbar and respiratory changes were collected. The two studies highlight the differences in therapy process between participants – one with a spinal onset, slow progression ALS and another with a bulbar onset, rapid progression.

In both cases, music therapy was tolerated well and perceived as pleasant, although moderately challenging. For both participants, developing the sense of agency played an essential role in the therapy process. Minor treatment protocol modifications were needed. Positive changes in the objective measures of respiration, cough, speech and swallowing were observed. 

Suggested individual adaptations of the experimental music therapy protocol included modifications of sitting posture, breathing technique, consonant changes in singing exercises, additional pauses and stretching, and changes to preferred song therapeutic performance.  A pilot study utilising the modified protocol is called for, followed by an RCT to assess the clinical effectiveness of the innovative MT treatment.

Article

Read article: https://doi.org/10.18103/mra.v11i12.47953425/12/4/494/htm

Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons with Early and Mid-Stage Amyotrophic Lateral Sclerosis—Protocol and Results from a Feasibility Study

Study protocol – Brain Sciences Journal; Apreleva et al, 2021

Respiratory failure, malnutrition, aspiration pneumonia, and dehydration are the precursors to mortality in ALS. Loss of natural communication is considered one of the worst aspects of ALS. This first study to test the feasibility of a music therapy protocol for bulbar and respiratory rehabilitation in ALS employs a mixed-methods case study series design with repeated measures. Newly diagnosed patients meeting the inclusion criteria were invited to participate, until the desired sample size (n = 8) was achieved. The protocol was delivered to participants in their homes twice weekly for six weeks. Individualised exercise sets for independent practice were provided. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation and personal impressions) were collected. Bulbar and respiratory changes were objectively measured. Results. A high recruitment rate (100%), a high retention rate (87.5%) and high mean adherence to treatment (95.4%) provide evidence for the feasibility of the study protocol. The treatment was well tolerated. Mean adherence to the suggested independent exercise routine was 53%. The outcome measurements to evaluate the therapy-induced change in bulbar and respiratory functions were defined. Findings suggest that the protocol is safe to use in early- and mid-stage ALS and that music therapy was beneficial for the participants’ bulbar and respiratory functions. Mean trends suggesting that these functions were sustained or improved during the treatment period were observed for most outcome parameters: Maximal Inspiratory Pressure, Maximal Expiratory Pressure, Peak Expiratory Flow, the Center for Neurologic Study—Bulbar Function Scale speech and swallowing subscales, Maximum Phonation Time, Maximum Repetition Rate—Alternating, Maximum Repetition Rate—Sequential, Jitter, Shimmer, NHR, Speaking rate, Speech–pause ratio, Pause frequency, hypernasality level, Time-to-Laryngeal Vestibule Closure, Maximum Pharyngeal Constriction Area, Peak Position of the Hyoid Bone, Total Pharyngeal Residue C24area. Conclusion. The suggested design and protocol are feasible for a larger study, with some modifications, including aerodynamic measure of nasalance, abbreviated voice sampling and psychological screening.

Read article: https://doi.org/10.3390/brainsci12040494htm

Music therapy protocol to support bulbar and respiratory functions in patients with early and mid-stage amyotrophic lateral sclerosis: a feasibility study

Doctoral Thesis by Alisa Apreleva, PhD, MT-BC, NMT, 2020

Background and aims. Respiratory failure, malnutrition, aspiration pneumonia and dehydration contribute to mortality in ALS. Loss of natural communication impacts quality of life. Previous studies demonstrate that music therapy exercises are effective for rehabilitation of patients with neurological conditions. The aims of the study were to investigate the feasibility of conducting home-based research, measuring the effects of a new music therapy protocol on bulbar and respiratory function in persons with ALS. It is the first biomedical music therapy research to do this and the first study of any kind to systematically look at supporting bulbar and respiratory functions in ALS. Methodology. Eight newly diagnosed patients were recruited. The music therapy protocol was delivered to all participants twice weekly for 6 weeks. The study duration was 16 weeks, with run-in, treatment and wash-out phases. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation, personal impressions) were collected. Bulbar and respiratory changes were objectively measured. Results. High recruitment rate (100%), retention rate (87.5%) and mean adherence to treatment (95.4%) provide evidence for feasibility of the study protocol. The treatment was tolerated well. Mean adherence to the suggested independent exercise routine was 53%. The outcome measurements to evaluate the therapy-induced change in bulbar and respiratory functions were defined. Findings suggest that the protocol is safe to use in early and mid-stage ALS and that music therapy was beneficial for the participants’ bulbar and respiratory functions. Mean trends suggesting that these functions were sustained or improved during the treatment period were observed for most outcome parameters: Maximal Inspiratory Pressure, Maximal Expiratory Pressure, Peak Expiratory Flow, Center for Neurologic Study – Bulbar Function Scale speech and swallowing subscales, Maximum Phonation Time, Maximum Repetition Rate – Alternating, Maximum Repetition Rate – Sequential, Jitter, Shimmer, NHR, Speaking rate, Speech-pause ratio, Pause frequency, Hypernasality level, Time-to Laryngeal Vestibule Closure, Maximum Pharyngeal Constriction Area, Peak Position of the Hyoid Bone, Total Pharyngeal Residue C24area. Conclusion. The suggested design and protocol are feasible for a larger study, with some modifications, including: aerodynamic measure of nasalance, abbreviated voice sampling and psychological screening.

Read publication: https://arro.anglia.ac.uk/id/eprint/706801/

Music therapy in multidisciplinary ALS/MND rehabilitation: research and practice

The International Alliance of ALS/MND Associations, Allied Health Professionals Forum presentation by Alisa Apreleva, PhD, MT-BC, NMT, 2018

Music therapy in multidisciplinary ALS rehabilitation: research and practice

Abstract, 16th Annual APF, International Alliance of ALS / MND Associations, Glasgow, UK; Apreleva & Brylev, 2018

Music therapy (MT) is the clinical use of music and its elements to accomplish individualized health goals within a therapeutic relationship. Music therapists have theoretical and practical knowledge of music, human psychology and physiology, and work with MDT to provide evidence-based, problem-oriented treatment. There is evidence that MT may be beneficial for psychological wellbeing of PALS during NIV use, may improve QoL, increase communication and decrease physical symptoms of the disease for people living with ALS (PALS), may be effective for managing behavioural and psychiatric symptoms of people with FTD, may have a beneficial effect on heart rate, respiratory rate, and anxiety in mechanically ventilated patients. MT has been shown effective to treat cognitive, sensory, and motor dysfunctions caused by human neurologic diseases. Still, MT is rarely available to PALS prior to the end-of-life stage when benefits of the intervention are limited.

Until the cure is found, more rehabilitation options for PALS need to be considered. MT may enable PALS to reach their fullest potential. It may also be an accessible and cost-effective way to decrease caregiver burden in CALS, including children.

Recommendations to the field: Professionally trained music therapists can provide symptomatic care for PALS and CALS, adapting to increasing disability, whilst maintaining trusting therapeutic relationship established early in the course of the disease. It is recommended that qualified music therapists are included into ALS MDTs. There is a need for continued research and higher levels of evidence to ensure effectiveness of MT applications in multidisciplinary ALS care.

Read article: https://www.als-mnd.org/wp-content/uploads/2018/11/2018-APF-Abstract-Programme-Book-8-5x11SMF-amended.pdf

Keynote presentation at II Congress on Mental Health in Moscow

Abstract, II Congress on Mental Health in Moscow, Russia; Apreleva, 2018

Multidisciplinary team approach is recommended to manage the complex, constantly changing phycological 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.

Read article: Music.ALS

Music therapy for rehabilitation in multidisciplinary care of people with amyotrophic lateral sclerosis

Abstract, XX Davidenkov Readings Neurological Congress, St.Petersburg, Russia; Apreleva, 2018

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).

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).

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 the 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.

Read article: https://congress-ph.ru/common/htdocs/upload/fm/davidenkov/18/tezis.pdf

Active music therapy approach in amyotrophic lateral sclerosis: a randomized-controlled trial

Randomized controlled trial – International Journal of Rehabilitation Research; Raglio et al, 2016

This randomized controlled study assessed the efficacy of active music therapy (AMT) on anxiety, depression, and quality of life in amyotrophic lateral sclerosis (ALS). Communication and relationship during AMT treatment were also evaluated. Thirty patients were assigned randomly to experimental [AMT plus standard of care (SC)] or control (SC) groups. AMT consisted of 12 sessions (three times a week), whereas the SC treatment was based on physical and speech rehabilitation sessions, occupational therapy, and psychological support. ALS Functional Rating Scale-Revised, Hospital Anxiety and Depression Scale, McGill Quality of Life Questionnaire, and Music Therapy Rating Scale were administered to assess functional, psychological, and music therapy outcomes. The AMT group improved significantly in McGill Quality of Life Questionnaire global scores (P=0.035) and showed a positive trend in nonverbal and sonorous-music relationship during the treatment. Further studies involving larger samples in a longer AMT intervention are needed to confirm the effectiveness of this approach in ALS.

Full article (for purchase): https://pubmed.ncbi.nlm.nih.gov/274

Neurologic Music Therapy

Neurologic music therapy (NMT) is a research-guided clinical model that is driven by advances in neuroscience and the understanding of the perception, production, and performance of music and how music can influence and change non-musical brain and behaviour function.

To learn more, please visit The Academy Of Neurologic Music Therapy website or download the information sheets below:

TOPICS: