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

Sherry Dupuis and Pia Kontos

  • Voix
  • Instruments acoustiques
  • Instruments rock
  • Appareils numériques
  • 5 à 12 ans
  • 13 à 18 ans
  • Adultes
  • Ainés
  • Intergénérationnel

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

  • Associations communautaires
  • Services sociaux
  • Santé
  • Diversité

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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