Dementia Dialogue

Hearts and the Arts, Season 3, Episode #36

This episode is the first in an 8-part series on the arts features a discussion on how the arts (in any form) can create a sense of community and belonging and builds relationships amongst participants. Host Lisa Loiselle talks with Lisa Meschino who has seen this first-hand during her work developing programs such as Gather at the Gallery and as an artist at the Dotsa Bitove Wellness Academy.  Lisa holds a PhD in cognitive neuroscience and is a community-engaged visual artist and researcher living in Toronto. She has worked for many years creating art with people living with dementia and is developing an arts-based learning series in applied relational care at University Health Network (UHN), Toronto. She has unfortunately witnessed the stigma that continues to circulate in communities and discusses the importance of using the arts to help in the process of culture change.

Resources:

About Meet Me at MoMA Program:

1. Meet Me at MoMA website – Program Guide for home and community programs:

https://www.moma.org/visit/accessibility/meetme/modules/

 2. Meet Me at MoMA website - Pilot program and research document: https://www.moma.org/visit/accessibility/meetme/_assets/momaorg/shared/pdfs/docs/meetme/MeetMe_FULL.pdf

3. Rosenberg, Francesca (2009) 'The MoMA Alzheimer's Project: Programming and resources for making art accessible to people with Alzheimer's disease and their caregivers', Arts & Health, 1: 1, 93 — 97

 

About The Dotsa Bitove Wellness Academy:

1. Mitchel, G.J., Dupuis, S.L., & Kontos, P.C. (2013). Dementia Discourse: From Imposed Suffering to Knowing Other-Wise. Journal of Applied Hermeneutics 2013 Article 5
2. Mitchell, G.J., Jonas-Simpson, C., Richards, J., Brown, S., Bitove, V. (2019). Creating a relational arts-based academy for persons living with dementia. First Published December 24, 2019 Find in PubMed: https://doi.org/10.1177/1471301219895647
3. Visual arts and transgenerational learning at the Bitove Academy: https://vimeo.com/540302311
4. About the Bitove Academy: https://vimeo.com/50757222

 

 

 

Resources for this episode can be found under the following sections on our resource page:
-Arts & Dementia

From Research to Action on 2SLGBTQI & Dementia, Season 3, Episode 37

Arne Stinchcombe chats with researchers doing work with lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2+) persons with dementia and carers. Jason Flatt is an Assistant Professor in the Social and Behavioral Health Program at the University of Nevada (Las Vegas) School of Public Health. Jason discusses how he got involved in dementia research and some of the concerns of 2SLGBTQI+ persons with dementia in their caregivers. He also makes the case for why sexual and gender diversity are important considerations within dementia research.

Celeste Pang (Senior Research Officer, Egale Canada) and Ashley Flanagan (Research Fellow, National Institute on Ageing) are researchers working on a Canadian research project involving LGBTQ2+ persons living with dementia and their unpaid carers in Canada. We discuss some of the findings from their research project and their implications. 

Both interviews reveal a need for specific initiatives to respond to this community's needs, especially in regards to caregivers.

Resources:

https://www.albertahealthservices.ca/assets/info/pf/div/if-pf-div-continuing-care-situational-examples.pdf

https://open.alberta.ca/dataset/0432e7da-2884-4a39-8b17-6199cadd4b7b/resource/5aeb5c77-bd1f-4963-ae4c-893e7c738340/download/social-isolation-l

https://www.cmaj.ca/content/191/31/E851

https://xtramagazine.com/health/queer-trans-care-for-older-adults-18373

https://clri-ltc.ca/lgbtq/

https://www.virtualhospice.ca/2slgbtq/

https://egale.ca/

 

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Groups will be held virtually over Zoom.

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We are hoping to begin these in early to mid-November. If you are interested, please fill out our form here https://forms.gle/a7hPoS4MTQHx5ZTh6 or contact Dementia.Dialogue@lakeheadu.ca

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Living Fully & Meaningfully, Season 3, Episode 38

In this new episode of our Arts & Dementia series, Lisa Loiselle and special co-host Cynthia Huling Hummel, speak with couple Lynda Everman and Don Wendorf about the importance of the expressive arts in self-care. Don describes expressive arts are esthetic or artsy that have the power to prompt emotions, to allow for an expression of emotions or an emotional reaction, to prompt memories and associations and allow some participation and sharing of that kind of experience with other people. It can be anything artistic like music, visual arts, writing and poetry. For Linda Everman, it is fabric arts like quilting and making stoles. Linda describes how the stole initiative began and how it has evolved into the writing of a book.  For Don and Cynthia, music has allowed each of them to express themselves but also connect with others. Cynthia, Lynda and Don also speak about the enjoyment they get from their respective arts endeavours and how that has allowed them to continue to live well as a  person with dementia and as care partners.

For more information go to the Arts & Dementia section of our resource page. 

In your seat and on your feet – Accessible dance, Season 3-Episode 39

Rachel Bar, the Director of Research and Health and TCAS Postdoctoral Fellow at Canada’s National Ballet School in Toronto speaks with Lisa Loiselle about dance and movement for those living with dementia. Rachel speaks about her lifelong involvement in dance and as a professional ballet dancer, and how that took her down an academic path researching how dance affects the brain. That subsequently brought her to working with older adults and people living with dementia, artistically and through program development.

Sharing Dance Older Adults is a collaborative program between Baycrest and Canada’s National Ballet School that works to make dance accessible for older adults with various physical and cognitive abilities. There are several versions of this program: In Your Seat and On Your Feet. These variations focus on dance across the lifespan and creating a joyful human experience in an accessible way, including delivering a group program and an at-home version. There are so many reasons and ways to dance, and Rachel talks about how the Sharing Dance Older Adults program includes and considers them all. She also speaks about the benefits of dance and how it can challenge the stigma about dementia.

As this program has expanded and continues to find ways to be more accessible, an app was launched in April 2021 to provide meaningful programs for Canadians, with hopes to expand internationally in the future.  

 Resources:

Journal article: Dancing With Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement (https://academic.oup.com/gerontologist/article/61/5/714/5903628) [see attached pdf]

link to the Sharing Dance site: https://oa.sharingdance.ca/

research project website: https://sdseniorsresearch.com/

https://www.dancingwithparkinsons.com

Connecting through Music - Season 3, Episode 40 and #4 in our Arts & Dementia Series

Simon Law is an award-winning songwriter, producer, and performer with two Grammy awards. Not only is music a large part of Simon’s life, but it was also an important piece of his father’s life even after he was diagnosed with dementia. Simon’s father appreciated music and especially loved the sounds of the Caribbean. Simon and his father were able to stay connected through the music they enjoyed. 

Simon reflects on his time working at the Dotsa Bitove Wellness Academy and making the documentary  “Music is Life”  https://youtu.be/6bfYnZTMFRc    and speaks about his new pursuit with the Bitove Method www.thebitovemethod.com  an online program.

The full version of “Try a Little Kindness” can be viewed at https://youtu.be/v7reLCS6Qq8. More information on Voices in Motion including a train the trainer program can be found at https://voicesinmotionchoirs.org and www.facebook.com/VoicesInMotionChoirs

The full version of   “Music Takes You Higher” can be found at             https://www.youtube.com/watch?v=h2HcRUEbJiM

^{The full documentary from which the final clip was taken can be found at “ The Intergenerational Choir Project - Alzheimer Society London and Middlesex”        https://youtu.be/L5o3Nh6ydb}

Other Canadian resources include:

 The Toronto Recollective is a weekly musical group that helps people with a cognitive impairment gain a new social network, rediscover a sense of accomplishment and find joy through music-making. https://www.recolectiv.ca

  Several Alzheimer Societies offer customized recorded music for people. You can learn more at  https://musicproject.ca/

From 3 to 4

Happy Holidays and thanks to all of our listeners, contributors, and supporters. 

We have assembled 3 series to help you celebrate this season - Ars, Spirituality, and Women & Dementia. Check out our website. 

We look forward to bringing you many interesting and innovative episodes in Season 4. 

We all have a part to play: Reimagining Dementia- Season 4, Episode 41

Guests Mike Belleville and Mary Fridley speak about Reimagining Dementia: A Creative Coalition for Justice . Mary, a longtime community activist recognized how COVID disproportionately affected people living with dementia and saw an opportunity for action and change. She brought together advocates from the arts community who had a similar mindset for social change and thought out of the box creatively. This newly formed alliance issued a Call To Action in September 2021. We also feature the Coalition's new song released on the same day as this episode.

The group has 500 members from 25 countries, with a passion for radically changing the culture of dementia through creativity and the arts has inclusivity at its core. As a member of the coalition, Mike feels that everyone has a voice and is heard. For people like him, with a dementia diagnosis, their opinions matter..

You can see a video of the song being performed at https://www.reimaginingdementia.com/campaign

Resources:

Reimagining Dementia Facebook Page: https://www.facebook.com/reimaginingdementia/

Article: https://content.iospress.com/articles/journal-of-alzheimers-disease/jad210057

Contact info: reimaginingdementia@gmail.com

 

Arts and Dementia Series- Healing through the arts: The journeys of one woman and a son and his father

Lisa Loiselle, explores the importance of the arts in the context of dementia from the lens of a personal advocate,  Rev. Dr. Cynthia Huling Hummel and a care partner, Daniel Potts.

Cynthia started having memory problems at the age of 49. She did not consider herself an artist until after her diagnosis and now she is a published author, artist, and fierce Alzheimer’s advocate. Cynthia talks about how she got started in the arts and how that work has turned into her published book, “UnMasking Alzheimer’s”, a compendium of stores and photos of 36 masks that she created as an artist.

Daniel C. Potts, is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Inspired by his father’s transformation from a blue-collar worker to a watercolor artist after his dementia diagnosis through person-centered care and the expressive arts. Dr. Potts has sought to make these therapies more widely available through his foundation, Cognitive Dynamics. Danny also speaks about a dark time in his life after his father’s diagnosis when, as a neurologist, he felt unable to help his parents. Seeing his father’s artwork, however, sparked something in him and he began writing poetry to help him deal with his role as a care partner. Dr. Potts shares one of his poems during this podcast

 

Biographies:

 

Daniel C. Potts, MD, FAAN is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, he also has been designated an Architect of Change by Maria Shriver. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award, which honors physician alumni whose lives epitomize the ideal of service to their communities. Along with his wife, Ellen W. Potts, MBA, he authored A Pocket Guide for the Alzheimer’s Caregiver, which is recommended by the Alzheimer’s Association, the American Academy of Neurology, and Maria Shriver. Inspired by his father’s transformation from saw miller to the watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics. Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He practices neurology at the Tuscaloosa VA Medical Center.

 

The Rev. Dr. Cynthia Huling Hummel of Elmira served in parish ministry for 15 years prior to her diagnosis of early-stage Alzheimer’s disease. She received her BS from Rutgers College, her MDiv from New Brunswick Theological Seminary, and her DMin from McCormick Theological Seminary.   Cynthia is a fierce Alzheimer’s advocate and has become a voice for those living with dementia- locally, nationally, and internationally.  She was recently appointed to serve a 4-year term on the 18 members, National Advisory Council on Aging representing the 5.8 million Americans living with Alzheimer’s and related dementias.   Cynthia is passionate about Alzheimer’s research and is in her 11th year of the ADNI study.  She is serving on the Dementia Action Alliance (DAA) Advisory Board and is the co-chair of the National Academies of Sciences Alzheimer’s Decadal Survey Advisory Panel. She has participated in three NIH Research Summits, the most recent in July 2020. Cynthia sings in the band ”Country Magic” and in 2016, was inducted into the NY State Country Music Hall of Honor.  A lifelong learner, Cynthia enrolled at Elmira College in 2011 and has taken 40 classes so far. Cynthia is an artist and an author.  Her book, “UnMasking Alzheimer’s” is a compendium of stories and photos of the 36 masks that she created.  In 2019, ten of her Alzheimer’s masks were displayed at the National Gallery of Art in Stockholm during the 2019 Dementia X Conference.  Cynthia loves to travel, kayak, to swim and enjoys serving as a substitute preacher. Her mantra?  “Don’t focus on what you can’t do.  Focus on how you can still make a difference.” 

 

Resources:

Cognitive Dynamics Foundation: https://www.cognitivedynamics.org

Daniel and Cynthis singing in a tornado shelter: https://www.facebook.com/don.wendorf.9/videos/1844816778968134/?d=n

The poem Danny read on the podcast set to music: https://youtu.be/_4KrNQgjc_s

Pandémie et mesures sanitaires : un défi pour les personnes atteintes de troubles neuro-cognitifs, leur entourage et les intervenants

Dans cet épisode, nous discutons avec Diane Dumaresq et Geneviève Arsenault-Lapierre. Diane a été proche aidante auprès de son mari Guy, décédé de la maladie d’Alzheimer en mars 2021. Leur dernière année ensemble a été marquée par la pandémie et les mesures sanitaires.

Geneviève, quant à elle, est chercheure auprès de l’équipe pancanadienne de Recherche en organisation des services sur l'Alzheimer – plus communément appelée l’équipe ROSA.

Diane et Geneviève collaborent actuellement sur un projet de recherche financé par les Instituts de recherche en santé du Canada. Ce projet, qui vise à améliorer la prise en charge des patients vivant avec des troubles neuro-cognitifs majeurs pendant la pandémie, réunit des chercheurs, des cliniciens, des patients, des proches aidants ainsi que des décideurs au Québec, en Ontario, en Saskatchewan et en Alberta.

Ensemble nous avons parlé de leur projet de recherche, de l’impact de la pandémie sur les personnes vivant avec des troubles neurocognitifs majeurs et leurs familles, ainsi que des services de santé et services sociaux en appui aux personnes atteintes de ces troubles.