Participants
Six participants experiencing Parkinson’s disease, Parkinsonism or Parkinson’s-related Dementia, and care partners worked alongside the artist and healthcare staff in both Dunmanway Community Hospital and Day Care Centre. This occurred in weekly one-to-one sessions over a four-month period in winter 2023.
Participants experiencing different types and stages of Parkinson’s disease participated in this project, ranging from early stage to advanced stages.
Justin Grounds, composer and artist with over 10 years’ experience working in Arts for Health settings in West Cork, acted as a mentor throughout the research, development and practical phase of the project. Justine Foster, Programme Manager of the Arts for Health Partnership Programme, also acted as an advisor on the project.
Aims
The Art & Parkinson’s project aimed to engage individuals with Parkinson’s disease and/or Parkinsonism through tailored art-making experiences that would serve to heighten creative potential and learning.
Parkinson’s disease relates to neurochemical alterations in the production and functioning of dopamine in the brain. This can lead to the experience of physical, cognitive and neuropsychological symptoms, for example resting tremor, stiffness and anxiety. Parkinsonism is an umbrella term for conditions that share some similarities with Parkinson’s symptomatology, in the context of rapid progression of disease.
The main objectives of the project were to enhance access, inclusion and participation of participants by considering the cognitive, sensorial, neurological, communicative, and physical experiences specific to Parkinson’s disease and its potential impact on the creative learning process and art-making experience.
Additionally, the project sought to share the findings with the administrative and artist team at Arts for Health Partnership Programme and the wider arts community and sector in West Cork. The purpose was to educate stakeholders on relevant insights gleaned from working with this participant cohort throughout the research project.
Micrographia (changes to handwriting) can be an early symptom of Parkinson’s disease, and can often cause particular distress to a person in the early stages. This project aimed to challenge perceptions relating to an individual’s linework, perhaps experienced as a ‘weakness’, by ultimately flipping the idea on its head and together reframing it as a ‘strength’. Through adopting specific strategies during the shared creation of visual artistic outcomes, together the participants and artist celebrated the unique linework that emerged and developed in the visual artworks.
The project would encompass both research and practical phases, inclusive of individual studio research initially, followed by over 20 individual one-to-one practice-based sessions with participants and care partners, over a four-month period.
Methods
This participatory project adopted a comprehensive approach designed to engage participants in meaningful art-making, with a focus on researching the impact of neurological, sensorial, motoric, communicative and cognitive underpinnings on the creative learning process itself.
A total of 22 individual sessions were conducted with six individuals at Dunmanway Community Hospital and Day Care Centre. The process emphasized a personalised and participant-driven approach, where one-on-one sessions and a ‘shared-canvas’ approach were central to creating a conducive environment.
Participants were provided with a choice of artistic materials and colours, including acrylic paint, watercolour, pastel, graphite, and charcoal, allowing the exploration of various mediums based on their interests and abilities.
Sessions were designed to be flexible and adaptive, taking into account the cognitive, sensorial, neurological, communicative, and physical aspects of each participant. The involvement of healthcare staff was central to the success and optimisation of sessions.
The artist facilitated a quiet and focused setting, minimising distractions and creating a comfortable atmosphere for participants to engage in. Techniques included modelling instructions, simplifying language, and optimising tone and positioning to enhance communication, fine motor skills/grip and comfort. Ethical considerations were paramount, ensuring continuous informed consent and offering participants autonomy and choice over their creative process.
The project also incorporated remote and online options for creative-carer sessions, allowing for broader participation and support, particularly in the case of infection control, reduced mobility and rural living of some participants.
Communication strategies were tailored to each participant, with a focus on present-moment interactions (i.e. talking about the ‘here’ and ‘now’), eliminating distractors in the environment where possible and labeling when demonstrating specific art techniques. The artist aimed to build a partnership with participants, following their lead and encouraging self-direction.
Throughout the sessions, the emphasis was on shared creation and learning, sharing of canvas, fostering a sense of connection, positive reframing, and mutual celebration. This collaborative approach not only enhanced the creative capabilities of participants but also aimed to leave a lasting legacy of creativity and self-expression.
Breakdown of Learning Outcomes
Participants in this project experienced a spectrum of cognitive, physical and communicative presentations impacting attention, mental health (anxiety and depression), tone, positioning, thinking, conversing and moving. Key learning outcomes from this project are as follows:
1. Environment
The value of one-to-one sittings proved essential for this participant cohort to enhance comprehension, attention and learning. Distractors in the environment can include loud background radio music, staff chatting among themselves, or excess visual stimuli. Making efforts to modify the environment was helpful when enhancing attention and comfort. Additionally, the artist paid particular attention to the physical tone of participants and kept tonal considerations in mind – if a participant presented as ‘high tone’, could neutral colours and balanced music be adopted into the environment to help decrease tone? Similarly, if a participant presented as ‘low tone’, could the artist uplift the environment to increase tone, for example by opening a window to let in fresh air, playing upbeat jazz or classical music in the background (as chosen by participant)?
2. Attention
To maximise a participant’s attention, the artist followed their lead and interest throughout all aspects of the creative learning process. Likewise, colour contrast and saturation theory was employed to stimulate visual acuity and discrimination. This enabled participants to choose their own colour palette, often complementary, with highly saturated and neon chroma to heighten visual attention. Neurobehavioural principles of daydreaming and dozing (Dockree 2023), were utilised throughout practice-based sessions. If a participant dozed off, this was framed and emphasised as being a necessary and positive aspect of the creative learning process, where novel artistic experiences and techniques could be consolidated by the participants.
3. Positioning
Ensuring healthcare staff were involved in the optimisation of a participant’s positioning throughout sessions was necessary, in order to further support breathing, speech and fine grip for this participant cohort. For example, at the beginning of a session, ensuring that healthcare staff work with the participant and artist to identify the best position in a chair, its proximity to the table and canvas, and perhaps support the arm/wrist by the use of a cushion can all augment the experience of artmaking.
4. Communication
Individuals with Parkinson’s-related presentations often present with disfluent, imprecise and rapid rate of speech. Additionally cognitive impairment can be experienced by participants. Being able to communicate to participants in such a way as to enhance comprehension and decrease pressure on cognitive load was of paramount importance to ensure the success of participatory sessions.
Could an artist talk about the ‘here & now’ more often when conversing e.g. ‘I love this song that is playing on my phone’? Could artistic techniques and concepts be labelled and demonstrated visually, instead of talking about them singularly e.g. ‘Look how we are creating form here in this part of the painting’? Could an artist simplify their own language and pace of talking, to optimise a comfortable communicative environment? Could an artist use more ‘yes/no’ questions for a participant to respond with e.g. ‘Do you want the gesso?’ Could an artist also use more choice-based questions e.g. ‘Do you want the charcoal or the watercolour?’.
Additionally, if a communication breakdown did occur (e.g. if an artist did not understand what a participant said), it is of particular importance for the artist to address this and not gloss over this miscomprehension, or pretend to understand when they did not. Being able to openly advise a participant that they did not fully understand what was said, can ensure that the participant feels valued and respected. If an artist were to only hear the following words ‘left of the picture’ from the full sentence: ‘I don’t think I should put green to the left of the picture’, the artist should say ‘I heard “left of the picture” at the end of your sentence, could you repeat only the start of the sentence that I missed so I can try and understand it again?’ This puts less pressure on a participant having to repeat a full sentence.
If an artist fails to understand what a participant wants to say, openly and directly communicate that you will take a minute, and come back again to try to talk about the concept again in a fresh way.
5. Care partners
Finding a way to involve care partners in the process was of importance. For one family, the use of remote/tele-health sessions was helpful in terms of infection control/prevention within the rural context. Being able to organise creative time through weekly sessions was invaluable for this household, which focused on the mother and daughter bond in creativity. The main challenge experienced when inviting care partners into the creative process was conflict with their own personal work.
6. Ethics
Considering the nature of mental health and cognitive fluctuations central to Parkinsonian profiles, establishing consent and choice throughout every session was important for participants choice, preferences and autonomy, in association with key healthcare staff involved. The artist’s use of reframing and re-guiding sensitive and sometimes less positive manners of talking about self and artmaking was employed. In this case, for example, should a participant exclaim ‘my line is terrible!’, the artist would reframe this as ‘I think it is fantastic, the way it curves and moves over here’ and over time, when reframed again and again, a participant may automatically say ‘the line is better’ or ‘the line is good isn’t it?’.
7. Minding yourself
As with any Arts & Health practice, it is particularly important for the artist to mind themselves when working with individuals with progressing and varied symptoms. Establishing support and guidance from the outset and linking in with healthcare staff at all stages of the practice-phase of the project is vital.
Artistic Outputs
The outputs of this project included a variety of artistic productions and events:
- Participants created shared artworks using different mediums and techniques such as use of block colour painting of canvas, gesso pours, as well as the creation of form, dimensionality and expression through the use of acrylic, watercolor, pastel, graphite, ink and charcoal during one-to-one sessions tailored to each other’s abilities.
- Sessions focused on the creative partnership and reflective learning between the artist and the participants, enabling an environment for unique linework and expressive portraiture to develop. Showcasing the rich creative outputs, for example, one participant who entered their portrait into the Dunmanway Fair Show 2024 came first place.
- At the end of the practical sessions, high-quality art material gift boxes that were tailored to participant interest/motivation were gifted to participants and care partners, to encourage the legacy of artmaking into the home and into their creative future.
- Additionally, 10 locally-made hardcover books were created to synthesize and document the project’s creative and learning outcomes. These were shared with participants, carepartners, healthcare staff and the local arts sector.
- Shared findings through an interactive presentation with the Arts for Health artists and administrative team at the Arts for Health Partnership Programme. Through a stimulating and lively discussion, learnings were shared to support their practice in care settings.
- In June 2024, a podcast episode was recorded between mentor Justin Grounds and participatory artist Áine Rose Connell to share the experiences, reflections and learnings from the project with a broader Arts & Health audience. This will be available for listening on the Arts for Health Podcast Series.
- An online, remote and digitally-accessible risk assessment policy was developed to enhance safety protocols and emergency awareness/planning when working with participants and carers in the Arts for Health Partnership Programme.
Evaluation Methodology
The ongoing and systematic evaluation of this project has been assisted through the use of consistent mentoring sessions between mentor Justin Grounds and the artist, and monthly meetings between Programme Manager Justine Foster and the artist where a focus on quality, impact and creative innovation was adopted.
Questionnaires were distributed pre-and-post practice-based sessions, and the testimonials of participants, healthcare staff and care partners were collated. The artist also created visual progress reports to ensure research, development and reflection were being documented over time.
An invaluable three-week studio residency award in Uillinn: West Cork Arts Centre in December 2023 provided the artist with the space and time to research, synthesize and reflect on learning, following the end of the practice-based participatory sessions.
Evaluation Outcomes
Testimonials from key stakeholders:
‘I enjoy the space away from the noise to draw, to talk.’ – Eileen
‘It’s so lovely to try something different, a real privilege. It takes your mind off things.’ – Barbara
‘I would like to learn from this experience, to learn how to make different things. I used to work with my hands every day with the masonry, the stones. Since I’ve been sick I don’t.’ – Tim
‘I feel very peaceful’ – Michael
‘My favourite thing about working together is to be able to get out of bed, going to the quiet room and to sit in the nice blue chair.’ – Eileen
‘The participants are very relaxed and seem to be benefitting from a beautiful experience.’ – Anita, Day Care Coordinator
‘We enjoyed dipping into the watercolour and seeing what happens… letting the paint do the work. I think it’s freeing.’ – Care partner
Participatory artist reflections:
As an artist, the project has profoundly impacted my creative practice and personal growth. Working one-on-one with participants, I navigated a delicate balance of guiding and observing, allowing the sessions to organically develop into a shared creative journey.
This experience enriched my artistic techniques, as I mirrored the unique physicalities and expressions of the participants, which to me can only happen if two people share a canvas together. This led to a more fluid and liberated approach in my artmaking, in particular my linework. I found the concept of using highly saturated and contrasting colours – particularly neons – as a mechanism to heighten visual attention, to be particularly interesting. Through the shared artwork, inherent ideas, symbols, line and highly saturated colours began to permeate my work in the studio.
The collaborative process of sharing a canvas allowed me to explore with participants, our mutual understanding and reflection on the themes of identity, connection, and disconnection, which significantly shaped my perspective on the value of interconnection in artmaking and its role in personal and collective wellbeing.
Documentation and Dissemination
Ongoing documentation of this project can be found on the Arts for Health website:
https://artsforhealthwestcork.com/learning/artists-residency-programme/
https://artsforhealthwestcork.com/a-dive-in-line/
The locally-made hardcover book was showcased to the public in Uillinn: West Cork Arts Centre for Bealtaine Festival in May 2024.
Visit the artist’s website for further information:
https://aine-rose.com/blog/a-dive-in-line-art-parkinsons/
Partners
Healthcare staff in Dunmanway Day Care Centre & Community Hospital