Parkinson’s disease (PD) is the second most common neurodegenerative disorder after Alzheimer’s disease, affecting nearly 1% of the population over the age of 60. In the last 25 years, the number of people suffering from PD doubled to approximately more than 6 million, thus reaching a pandemic dimension. The clinical phenomenology of PD is traditionally described in terms of motor symptoms, including slowness, tremor at rest, rigidity, and postural instability.
However, PD can manifest with a wide array of non-motor features encompassing mood changes, cognitive deficits, psychosis, behavioral abnormalities and perceptual impairments. These symptoms do not necessarily parallel the degree of patient’s physical disability, as they can develop prior to the onset of motor symptoms, as well as in the most advanced stages of the disease. As an aggregate burden, psychiatric and behavioral symptoms can promote a persistently negative self-image, thus exacerbating stigma and shame, leading to progressive social and emotional withdrawal. The resulting cumulative disability directly reduces quality of life, social competence and functional independence.
Currently, there are no proven disease-modifying therapies capable to slow or reverse the underlying neurodegenerative process of PD. Available symptomatic treatments mainly focus on enhancing dopamine concentrations or stimulating dopamine receptors. While these strategies typically allow for a good control of motor symptoms, the effects on non-motor features and overall patients’ psychosocial sphere are usually less satisfactory.
The American Art Therapy Association defines art therapy”(AT) as “a mental health profession utilizing the creative process of art making to help people solving conflicts and problems, developing interpersonal skills, reducing stress, and increasing self-awareness”. The creative process of art making can unveil subconscious information that can be then formally addressed by the art therapist. As such, AT is not primarily concerned with the aesthetic quality of client’s art products. The guided use of artistic expression aims to improve physical, mental, and emotional wellbeing by promoting individual’s sense of normalcy, competency and wellbeing, despite an ongoing physical or psychological disability.
A growing number of studies reports beneficial effects from AT on emotional and psychological wellbeing in different clinical populations, including patients affected by dementia, post-traumatic stress disorder, chronic anxiety, major depressive disorder, etc. Indeed, the impact of engagement in the arts to support physical and mental health for a wide range of medical conditions has been widely recognized by both consumers and healthcare providers (Crone, Sumner, Baker, Loughren, Hughes, & James, 2018). Long term, sustained engagement with arts was found to offer prolonged health benefits for older adults including higher life satisfaction and wellbeing (Tymoszuk, Perkins, Spiro, Williamon, & Fancourt, 2019).
Significant increases in wellbeing were also noted for adults with multiple medical conditions (Crone, Sumner, Baker, Loughren, Hughes, & James, 2018). This approach gained official recognition in 1998 when the U.S. Congress added to NIMH a new institute titled the National Center for Complementary and Integrative Health. More recently, the proposal of non-medical interventions to “address wider determinants of health and to help patients improve health behaviours and better manage their conditions” has gained widespread support in mainstream healthcare (Drinkwater, Wildman, & Moffatt, 2019). In a systematic review, Chatterjee, Camic, Lockyer, & Thomson (2016) advocated for arts’ inclusion in social prescribing based on notable positive outcomes in self-esteem and confidence; mental wellbeing and positive mood; and diminished anxiety, depression and negative mood.
As health professionals concerned with the care of people with PD, we believe that current standards of rehabilitation for this destructive disease should be re-thought to address patients’ global needs in a comprehensive, multidimensional, and compassionate fashion. Community based art therapy initiatives have addressed stigma, promoted empowerment, aided social inclusion (Allen, 2008) and created arenas of safety for participants (Ottenmiller & Awais, 2016). Community engagement in the arts was specifically found to increase a sense of belonging, enabling participants to cultivate relationships, become more active, and connect to health relevant information (Pearce, 2017).
Therefore, we now plan to offer an AT intervention for people burdened by PD in form of a Community-Based Art Therapy program. The rationale of this program rests on solid scientific evidence, including our ongoing research findings at the NYU Marlene and Paolo Fresco Institute for Parkinson’s Disease and Movement Disorders (Cucca et al. “ExplorARTPD Study”, Kellar Family Foundation Grant #ID: C17-00191). According to our preliminary results, AT holds therapeutic potential to improve clinical symptoms and quality of life of people with PD. In this clinical population, art therapy may indeed serve as an effective adjunct to pharmacological therapies, with potential advantages including, for example, the lack of drug-associated adverse effects, as well as potential cost-saving benefits. The convergence of our observations and participant self-report provide compelling rationale to proceed with community-based art therapy.
In the community model, participants will have substantial freedom to choose materials and themes, and they can work alone or with collaborators of their choosing.
We will provide direct AT tutorship if requested. This agency would offer opportunities to gain back the autonomy that if often challenged by burdens of disease symptoms. The art therapists will remain present as skilled facilitators, now available to provide structure and offer reflection that will illuminate insight and awareness. This ambitious community-based initiative represents an unprecedented effort to improve functional independence, psychological wellbeing and overall quality of life for both patients and their loved ones.
The community program will be held in two Art Therapy Labs located in the cities of Florence and Vicenza, respectively. The labs will be open on weekdays and patients will be asked to schedule their appointment ahead in order to ensure the proper enforcement of social distancing measures and a smooth access to the art ab settings. Each daily session will include individual or group of 3-5 PD patients. Patients will be reached primarily through the local associations of patients on the territory. Artworks will be presented in Art Exhibitions also for fundraising. The same space of Art Lab will be used for the pilot study, clinical research project and for the Art Therapist training program. This initiative is intended to honor the fundamental Mission of the Fresco Parkinson Institute Foundation to improve the quality of life of people with Parkinson’s disease and their loved ones bridging Art and Neuroscience.