CNMN > Projects > Let’s Reimagine: Challenging the Stigma of Dementia Through Collaborative Song-Writing

Sherry Dupuis and Pia Kontos

  • Voice
  • Acoustic instruments
  • Rock band instruments
  • Digital devices
  • Adults
  • Seniors
  • Intergenerational

Writing, recording, and producing the song/video took 8-months.

  • Community associations
  • Social services
  • Health

Let’s Reimagine: Challenging the Stigma of Dementia Through Collaborative Song-Writing

Description

 “There’s a human con­nec­tion, despite what some peo­ple like to think… Despite age or dis­abil­i­ty, there’s a human­ness amongst all of us if you look for it. And that’s what we’re try­ing to do with this song.” — Wal­ly Cox (Reimag­in­ing Demen­tia coali­tion member)

 

The Coali­tion: Reimag­in­ing Demen­tia: A Cre­ative Coali­tion for Jus­tice is an inter­na­tion­al group of demen­tia activists and allies, includ­ing peo­ple liv­ing with demen­tia, fam­i­ly mem­bers, pro­fes­sion­als, artists, researchers, pol­i­cy mak­ers and oth­ers – all of whom share a vision of life, care and sup­port that pro­motes inclu­sion, rela­tion­al­i­ty, cre­ativ­i­ty, joy and the pos­si­bil­i­ty of growth for every­one liv­ing with demen­tia.  

 

The Project: Let’s Reimag­ine is a co-cre­at­ed song and video project that aims to chal­lenge stig­ma, and show how peo­ple liv­ing with demen­tia can engage, con­nect and live a vibrant cre­ative life in com­mu­ni­ty with oth­ers. The song and video devel­op­ment process was facil­i­tat­ed entire­ly online by two-time Gram­my award win­ning musi­cian Simon Law, who also pro­duced the song in col­lab­o­ra­tion with over 700 musi­cians, song-writ­ers, peo­ple liv­ing with demen­tia, fam­i­ly care part­ners, and oth­er mem­bers of the coali­tion from dif­fer­ent parts of the world.  

   

Guid­ing Prin­ci­ples:  

  

Let’s Reimag­ine was ground­ed in two key par­tic­i­pa­to­ry approach­es: 

  

1. Lib­er­a­to­ry Arts: Lib­er­a­to­ry arts uses the arts for social jus­tice pur­pos­es to chal­lenge assump­tions, expose harm­ful prac­tices and social rela­tions, and imag­ine and effect new pos­si­bil­i­ties for address­ing inequities and enhanc­ing qual­i­ty of life. Lib­er­a­to­ry arts are par­tic­i­pa­to­ry, inclu­sive of diverse (and all) voic­es, cre­ative, dia­log­i­cal, trans­for­ma­tive, con­scious­ness-rais­ing, de-cen­tring, com­mu­nica­tive, and eval­u­a­tive.   

  

2. Authen­tic Part­ner­ships: Authen­tic part­ner­ships rec­og­nizes the capac­i­ties of peo­ple liv­ing with demen­tia and seeks to work in part­ner­ship with diverse stake­hold­ers, includ­ing peo­ple liv­ing with demen­tia, to chal­lenge stig­ma and pro­mote inclu­sion and social jus­tice for all peo­ple with demen­tia. Co-cre­at­ed with peo­ple liv­ing with demen­tia, the approach artic­u­lates what is essen­tial to sup­port and sus­tain authen­tic col­lab­o­ra­tive deci­sion-mak­ing that is inclu­sive of peo­ple liv­ing with demen­tia (see the Authen­tic Part­ner­ship hand­out for more infor­ma­tion).

 

Co-Cre­at­ing Let’s Reimag­ine: To make this project tru­ly inclu­sive of diverse per­spec­tives, and to cen­ter the voic­es of peo­ple liv­ing with demen­tia, the song-writ­ing and pro­duc­tion process includ­ed the fol­low­ing: 

  • series of online arts-based and play­ful activ­i­ties with coali­tion mem­bers aimed at iden­ti­fy­ing key mes­sages to be reflect­ed in the song. Draw­ing on the diverse tal­ents of coali­tion mem­bers, we worked in small groups, using break­out rooms to dis­cuss and cre­ative­ly rep­re­sent how they “re-imag­ine demen­tia” by ask­ing: “what do you want the world to know about demen­tia?” “What does re-imag­in­ing demen­tia mean or look like for you?”
    • For instance, group mem­bers rep­re­sent­ed their dis­cus­sions through poems, spo­ken word, art, and songs. You can try this activ­i­ty with any group by ask­ing them “What do you want the world to know about .…?”, “What do you need to live well?” etc. Then ask them to come up with images and words that reflect their answers to the ques­tions. These images can be pulled togeth­er into a col­lab­o­ra­tive col­lage or you could work with the group to cre­ate a poem out of the words they come up with. The col­lage and/or poem can then be the start­ing point for a song.
  • Record­ing inter­views with coali­tion mem­bers liv­ing with demen­tia to explore their expe­ri­ences of stig­ma which were direct­ly includ­ed in the song.
  • Col­lab­o­ra­tive­ly ana­lyz­ing dis­cus­sions and out­puts pro­duced dur­ing those activities/interviews which were used to inspired the lyric cre­ation and the devel­op­ment of musi­cal riffs for the song. 
  • Work­ing with peo­ple liv­ing with demen­tia and oth­er mem­bers of the coali­tion to audio-record dif­fer­ent parts of the song, pri­or­i­tiz­ing the voic­es of peo­ple liv­ing with demen­tia as soloists for the vers­es of the song. 
  • Invit­ing coali­tion mem­bers, orga­ni­za­tions, and broad­er com­mu­ni­ty part­ners from around the world to share pho­tos, video clips, and art rep­re­sent­ing what it means to live well with demen­tia that were then used for a music video to accom­pa­ny the song. 

Sup­ports: The Coali­tion uti­lized the fol­low­ing strate­gies to sup­port the col­lab­o­ra­tive song-writ­ing process:  

  • Form­ing a small­er song-writ­ing com­mit­tee (approx­i­mate­ly 7 peo­ple) respon­si­ble for con­sol­i­dat­ing the ideas formed at the larg­er mem­ber gath­er­ings, and draw­ing on these to cre­ate ini­tial song lyrics. In an iter­a­tive process, ideas were shared with the larg­er group for feed­back and used to help to devel­op the lyrics, and this process con­tin­ued until every­one was hap­py with the lyrics.
  • Draw­ing on the diverse tal­ents of mem­bers to cre­ative­ly explore mes­sages impor­tant to share in the song.  
  • Draw­ing on Coali­tion mem­ber net­works to bring in more per­spec­tives, inputs and voic­es (i.e., reach­ing out to com­mu­ni­ty choirs and musi­cians from dif­fer­ent coun­tries to sing and play parts of the song; invit­ing mem­bers to share pho­tos and videos of them­selves, friends and/or fam­i­ly mem­bers liv­ing well with demen­tia; part­ner­ing with ther­a­peu­tic recre­ation­ists, life enrich­ment staff, and music ther­a­pists in day pro­grams, res­i­den­tial aged care set­tings, and oth­er pro­grams to sup­port peo­ple liv­ing with demen­tia in learn­ing and singing parts of the song, danc­ing to the song, and/or cre­at­ing art­work or plac­ards that chal­lenge the stig­ma asso­ci­at­ed with demen­tia and show­case the cre­ativ­i­ty of peo­ple liv­ing with demen­tia). To see exam­ples please refer to the gallery.  
  • Sup­port­ing mem­bers to learn about and nav­i­gate Zoom, and use tech­nol­o­gy to record parts of the song (i.e., host­ing learn­ing ses­sions on Zoom to prac­tice the song and how to record it on dif­fer­ent devices; cre­at­ing and email­ing a hand­out to mem­bers with instruc­tions on how to record vocals; hav­ing 1:1 Zoom meet­ings with mem­bers who need­ed extra sup­port in the record­ing process).  

Con­sid­er­a­tions: Remem­ber­ing the pur­pose and goal of this project while col­lab­o­rat­ing with over 700 peo­ple was chal­leng­ing at times. For exam­ple, we found that hav­ing input from so many peo­ple gen­er­at­ed many more ideas than could be reflect­ed in the song, which made it dif­fi­cult to ensure that all voic­es were includ­ed. We found it was impor­tant to remind our­selves of our authen­tic part­ner­ship phi­los­o­phy and to engage in crit­i­cal reflec­tion about our pri­or­i­ties and objec­tives. With this reflec­tion we re-affirmed the impor­tance of cen­tring the voic­es of peo­ple liv­ing with demen­tia in both the cre­ation and record­ing of the song, which was piv­otal to our deci­sion to extend the project time­line to ensure that peo­ple liv­ing with demen­tia were fea­tured as soloists in the song. You can hear about what it was like to be involved in this process for one of our soloists liv­ing with demen­tia by watch­ing the short video clip “Inspir­ing Hope Through Col­lab­o­ra­tive Engage­ment”. Oth­er mem­bers of our team share their expe­ri­ences in the full “Launch Par­ty” video. You can hear the song Let’s Reimag­ine and watch the video by click­ing on the link to “Let’s Reimag­ine” below. 

  

Broad­en­ing Engage­ment: To inspire broad­er glob­al social engage­ment, we includ­ed resources on our web­site (i.e., song lyrics and audio files) for any­one who want­ed to cre­ate their own ver­sions of the song and/or video. For exam­ple, Reimag­ing Demen­tia Malaysia cre­at­ed their own lyrics and music video from the audio tracks pro­vid­ed on our web­site. We invite oth­ers to cre­ate their own or new ver­sions of the song and share those with us. Please refer to the lyric sheet and audio tracks pro­vid­ed on this page 

 

Quotes From The Project:

  • “Every­one can thrive if we believe it and are bold enough to try it”
  • “I use music to chase away the brain fog on those days where I can’t real­ly think straight. […] I do a lot of reimag­in­ing, espe­cial­ly on rough days, and it was great and a won­der­ful oppor­tu­ni­ty to do this.”
  • What’s impor­tant is to […] go for­ward and be loved and love, and I think that this kind of thing shows that.”
  • I hope that it brings about free­dom, and edu­ca­tion for those who have a stereo­typ­i­cal view of what demen­tia looks like and how it can be reas­sur­ing to turn it around to see how peo­ple can live hap­pi­ly […]; they can still express them­selves and they can still have fun.”
  • Music is such a pow­er­ful thing; it’s just one of those things that goes into your soul […] and I wish more peo­ple would do this — dis­cov­er things that they can enjoy, but that also brings them peace and calm.”
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Score

Video

Audio

Image Gallery