The Methodological Challenges of Research into Dance for People with Parkinson's

Abstract

Parkinson's is a neurodegenerative disease that affects one in 500 people. It is a condition that affects the ability to initiate movement, to keep movement going and to stop movement voluntarily. Often, symptoms manifest themselves as limb tremors, rigidity of muscles, slowness of movement, a lack of co-ordination and difficulty in balancing. Many people with Parkinson's fall regularly and many feel socially isolated. There is no cure, and drugs to alleviate symptoms can be unreliable, sometimes even resulting in involuntary movement (dyskinesia) and hallucinations. There is a small but growing network of dance practitioners who deliver group dance sessions to those with Parkinson's. Evidence suggests that temporary relief of some symptoms is afforded by dancing to music and that dancing aids some people with Parkinson's to cope better with everyday actions. Most dance practitioners, however, approach sessions as a way for people to engage in an artistic and social practice. This paper was written at the start of a mixed-methods research project carried out in conjunction with English National Ballet, whose Department of Learning piloted twelve dance sessions for people with Parkinson's based on Nureyev's Romeo and Juliet. It discusses the tension between characterising dance as a rehabilitative therapy and perceiving it as an artistic and social practice. Most Parkinson's research has focused on finding a cure through neurological, biomechanical and pharmaceutical explorations. There has also been a reliance on numerical data for quality of life reports. In addition, the majority of research examining dance for people with Parkinson's has used quantitative methods and has focused on clinical benefits afforded by dance. The dominance of, and perceived need for, ‘hard’ scientific research methods and analysis prove a challenge to the qualitative researcher, who comes with a different viewpoint on how we know and understand the world, and with different ways of researching. The paper will argue that a dance researcher with a different methodological base can also offer potentially useful insight into the individuals who have this neurological condition, an insight different to that offered by quantitative research. Using sociological tools, such as interview and observation techniques, the qualitative researcher may examine participants’ lived experience of dancing with a body that moves in an unpredictable and atypical manner, as well as analysing the context in which this experience takes place. There is a need to focus attention on the dancing person, rather than merely on his or her disease. The paper reviews the literature on dance for people with Parkinson's, as well as outlining the traditional methodologies used to examine the disease and its symptoms. In doing so, it identifies the gaps in knowledge that could be explored through qualitative approaches, as well as how such approaches may be of use in strengthening ideas proposed by scientific methods. Through scoping arguments made by disability studies scholars, the paper goes on to advocate for a qualitative approach that critically engages with context, language and actions, but that also acknowledges the materiality of the body. By placing the person and his or her experiences at the centre of research, it argues that a qualitative study is well placed to examine how a person can ascribe value to dance as an artistic and social practice, while attempting to cope with a debilitating condition through dancing.

The efficacy of dance for improving motor impairments, non-motor symptoms, and quality of life in Parkinson’s disease: A systematic review and meta-analysis

“…Other qualitative studies found dance helped people living with PD redefine their approach to managing symptoms [26], enhance self-efficacy and self-confidence through increased participation [27], and find new pathways of movement that allowed for greater freedom and expression [80]. Houston has advocated for the importance of qualitative research in this context [81] and her 2019 book, Dancing with Parkinson's, highlights its relevance. Through interviews and observations, she learned that dancing can help people with PD to learn how to live well with Parkinson's, exert agency in their lives, and experience feelings of beauty, grace, and freedom [82].…”

Exploring Music-Based Rehabilitation for Parkinsonism through Embodied Cognitive Science

“…Art-based therapies in general, and music therapies in particular, have been widely employed in the treatment of unipolar depression ( 248 , 249 ), leading to encouraging results. An example comes from dance therapies, which have been proven effective in improving physical fitness and well-being more generally ( 250 – 252 ).…”

Feeling Lovely: An Examination of the Value of Beauty for People Dancing with Parkinson's

“…• What contributions to movement as an artistic medium are gained from studying Parkinsonian ways of moving (Houston 2011) I was struck by Carroll's insistence on the feeling of being beautiful as the most important aspect of participating in the dance class, which did not wholly seem tied to the fact that her movement temporarily becomes more fluid. Carroll returned to the idea of feeling lovely at the end of the interview, stressing its importance for her:…”