The ‘learnings’ presented here are organized as follows:
- Dancers’ Background
- Assessment of DWP
- Ideas for Improvement
- Fostering of camaraderie, social connection with others, sense of belonging and normalcy
- Joy and hope
- Instructors and volunteers and the environment they create
- Facilitates artistic and emotional expression
A. DWP Pre-Summer Survey Results
We conducted a pre-summer survey with DWP participants to better understand their background, experience with DWP, and potential areas for improvement. A total of 20 participants completed the survey. The responses from this sample are summarized below.
- Most (75%) surveyed participants come once a week, a few (20%) attend more than once a week, and a small number (5%) attends once a month.
- Almost half (45%) of respondents have been coming for 1-3 years, with about 20% of the sample coming for over 3 years, 10% coming between 1 to 6 months, and 25% coming for less than a month.
- Less than half (40%) of those surveyed come with a caregiver.
- A large majority (70%) of the sample rated their general health as “very good”; 10% rated their health as “excellent”, 15% of the sample rated it as “good”, and 5% rated their health as “poor”.
- Nearly half (45%) of the sample were fully independent, 25% of the sample were independent with the use of a device but no physical help, 20% needed minimal hands on assistance; 10% needed frequent hands-on assistance
- Most individuals had an easy time eating, balancing and swallowing.
- Most individuals had a moderate level of confidence about not losing their balance or becoming unsteady as they walked around the house (median = 4).
- Most individuals are quite confident about bending over and picking something off the floor (median = 3).
- Most individuals were fully independent in brushing their teeth, giving themselves a bath and dressing themselves (median = 1).
- Most (70%) individuals are very or somewhat comfortable in expressing or communicating with others.
- Half (50%) of respondents exercise for more than 3 hours per week, with another 25% of the sample exercising between 2 to 3 hours per week.
- A large majority (65%) of the sample participated in other physical activity programs.
Examples of other activities:
Assessment of DWP
- 100% of the sample had not danced regularly before joining DWP
Why did you start coming to the classes? What was your motivation for coming?
- Six of the 20 respondents (30%) said for physical activity/ exercise:
To be active and stronger physically and have fun
To get out more and to exercise more
To be able to move more and be healthier
- Another six participants (30%) said proactive way to manage, cope and live well despite Parkinson’s disease, slow the progression of the disease:
A different kind of therapy for P.D.
To maintain mobility and independence for as long as possible.
I wanted to do something new (to me) in order to stimulate my brain to find new pathways to replace those no longer working
To try to diminish the effects of PD
I figured the exercises would slow the progress of the disease. It ‘forces’ me out of the house
- A few others said to meet new people and get more social interaction:
I started coming to class because I enjoyed meeting new people
[…] To get social interaction. Have fun
- Others came out of curiosity, were encouraged by a friend or simply to have fun.
Ideas for Improvement
Surveyed dancers were asked what they don’t like about the DWP classes and their suggestions for improvement. 14 of the 20 respondents did not feel there were any other improvements that could or should be made. However a few participants offered the following suggestions:
B. Learning about MECHANISMS from Client Surveys and Interviews
The qualitative analysis of client surveys and interviews shed light on client perspectives of how DWP classes seem to be making a difference in their lives. Analysis included 20 pre-summer surveys and 5 face-to-face client interviews. And although the journals were not intended to collect data to explore mechanisms, a few comments are included from client reflections in their journal entries.
Fostering of camaraderie, social connection with others, sense of belonging and normalcy was frequently mentioned by clients as why they keep returning to DWP and what is their favourite aspect of the dance classes. Social interactions may be especially important for this population as the physical and emotional symptoms commonly experienced by PD patients such as stiffness, tremor, and depression may pose significant challenges that inhibit individuals from participating in social activities or even leaving their home.
The sense of a “common humanisms” that we all share, no matter at what stage of Parkinson’s we are at. Dancing helps us regain our humanity
I enjoy exercising to music and to meet people with Parkinson’s although we are in different stages of the illness
I enjoy coming to the class because you are with a bunch of people who are similarly afflicted
The community is quite clear, we are all Parkinson’s patients and in a sense it makes it easier. There is no miracle cure at the end of the road
Joy and Fun experienced by participants seemed to contribute to them feeling better:
Feel good / better. Lifts spiritsClasses are fun
I always feel invigorated after this class
It’s a happy time. So you come for happiness. And we’ve all got diseases, various forms of the disease, Parkinson’s. But it’s a fun time to be with other people. And I know it’s going to be a happy time, the smile on people’s faces.
Hope and Encouragement experienced by participants seemed to contribute to them feeling better:
The emotional feeling of dancing with afflicted people all trying to help themselves and one another
I feel better when I come to the dance classes. I am more positive in my attitude
And it gets us moving, and you know, we really move better in a group because you can watch your neighbour a little bit or somebody across the circle. I find it’s very encouraging. […] And by doing these kinds of exercises and movements and, it encourages me.
I come downtown to, for an hour of Dancing with Parkinson’s. And the tunes are there, and the ideas are there. And I can’t wait to, for the daytime so I can go and do all this again. So it’s an encouragement thing.
Instructors and volunteers and the environment they create:
Many participants spoke very fondly of instructors and volunteers. These comments suggest that the DWP team makes a difference through making the participants feel welcomed, cared for, motivated and supported.
The warmth and enthusiasm of the teachers and volunteers
The teachers are great. We’re so lucky to have real dancers
The instructors and students seemed to truly care for each other
I keep coming back because it is such a nice atmosphere and the teachers and volunteers are so giving and it is such a warm feeling. It is often the highlight of my week so I try not to miss it
Excellent instructors who are also very motivating
I love the teachers and volunteers for the support they give and the exercise and dances that they teach
Rachael. There is no other person I have ever encountered that can connect so genuinely and with such sincerity and warmth
Finally, I must say that DWP on Wednesdays is often the highlight of my week. In large part this is because of the wonderful, caring teachers and volunteers, over the past seven years, especially Sarah Robichaud, Sarah Murphy-Dyson, Yolande, Miriam, Lhara, Robin, Nikki, and Rachael. Thanks to all of them
Music plays a major role in the ecology of what impacts mood and elicits joy, and what enables the body — cueing movement initiation, facilitating coordination and releasing rigidity/enhancing flow:
Music is soothing and energizing
Music brings me out of a funk if I’m feeling down
I keep coming back because music helps, it gets you in a different mood altogether; also the nice people in the group and the nice ladies in the group who know how to dance and how to take care of the people
I feel enabled to dance and move when there is music
Now in this class, [music] is helping me to move more easily and have fun with a lovely group of people
There is some connection with exercise, music and Parkinson’s
Music helps me to coordinate, it keeps me from falling
Music with a good beat helps me keep in step with repetitive movements. Without the music, I quickly lose the motion
I think that music helps my body to move with flexibility
I keep coming back because of a certain degree of exhilaration that comes from listening to music, though not show tunes, that’s not part of the attraction
Music has always been a big part of my life. It has always been uplifting
You can get a high on music. And that conquers Parkinson’s as well, tackle it on all fronts type of thing.
Facilitates artistic and emotional expression:
Facilitating avenues of expression could be especially meaningful for some Parkinson’s patients who experience speech problems such as slurring, hesitation before talking or lack of usual tone inflections. The potential implications of speech problems were also echoed in a previous survey question where 10% of the sampled cohort reported being somewhat or very uncomfortable with communicating with others. The dancing and movement within DWP provide an alternative means for participants to express themselves freely using their body, rather than just communicating via speaking:
I think it’s learning to express my feelings through movements, to “give in” as it were, to the rhythm of music and dance
The way the dancing makes me feel
Sometimes the music, especially if it is familiar, makes me want to sway in time or wave my arms like trees or birds or clouds
Music helps us feel with our bodies
They have to be here. And they will feel the language being expressed is contagious.
Touch was noted early on in the development of DWP’s theory of change as an integral component to their Social Connectivity Formula. Through a deeper understanding of what happens at the human biological level when touch occurs, physical touch seems likely a key mechanism in helping to bring about the other important mechanism for this group, Social Connection. Touch also may partially explain why people feel good after dancing. Physical touch releases the hormone oxytocin which enhances feelings of attachment and social connectedness. Very recent research published in 2015 by the Proceedings of the National Academy of Sciences also has established that there is a link between oxytocin and anandamide (which has been called the “bliss molecule“) having the ability to illicit motivation, reward, and happiness when we connect with others.
At my departure, Sarah [instructor] gave me a delicious hug. Hugs are so important. I could write an essay on them…
Holding hands in a circle at end of class is sometimes an emotional experience for me. [as part of what this client values most about the classes]
C. Assessment Statements from Client Interviews
I keep coming back because it’s something I can’t do without it. If I miss, there is [AN1] all hell to pay in my body, it doesn’t feel as good. It is necessary for my existence
The changes I find is that there are some things that are possible with dancing that are not possible with exercise
It really helps me (the class), I was able to lower one of my medications
Some of the changes I notice in my body is that I am probably a little bit more agile than a year ago. I get out of bed better and I remember to swing my arms
People’s attitude has changed because they say to me, you don’t look as if you have Parkinson’s
I come back because it’s great exercise in a very informal setting. I find that moving my body in ways that I am not accustomed helps the illness, helps me cope with the illness; it makes me feel better. I thinks it has some physical effect on the Parkinson’s illness
One less positive assessment:
I am not aware of any differences. I take some other classes and that does more for me. I enjoy it (the class)