Dementia Dialogue
S’adapter pour mieux vivre!

S’adapter pour mieux vivre!

May 18, 2022

Notre invitée pour ce troisième épisode est Claire Giallonardo. Claire est native de Timmins, dans le nord de l’Ontario et habite maintenant dans la région de Peel. En 2014, alors qu’elle avait à peine 55 ans, Claire a reçu un diagnostic de Parkinson.

À la suite de ce diagnostic, Claire a dû repenser à son avenir et faire d’autres projets de vie; une période très difficile qu’elle qualifie de « traumatisante ». En contrepartie, cette période lui a aussi permis d’élargir son cercle social, de s’impliquer auprès de sa communauté et de renouer avec son amour des arts.

Claire et moi avons parlé de tout ça et bien plus encore dans le balado qui suit !

 

Cliquez sur ce lien pour lire le poème de Claire qui s’intitule « Faux cils, quelques-unes des toiles de Claire, et la biographie et photo de Claire  https://www.dementiadialogue.ca/podcast-3-biographies

 

 

Episode 46: Young-Onset Dementia: changing the narrative

Episode 46: Young-Onset Dementia: changing the narrative

May 3, 2022

Jill Czuczman a care partner to her husband David, living with Frontotemporal Dementia talks about some of the unique challenges associated with young-onset dementia from the long road to getting a diagnosis, to leaving the workforce early, the lack of understanding and stigma, to the struggles to find supports that meet the unique needs of those living with or caring for someone with dementia in mid-life. Facing these challenges head-on, Jill shares how she and David have made the choice to find the positive every day and the steps they have taken to live well with dementia, including getting involved in research and becoming advocates.

Resources

Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010

The Association for Frontotemporal Dementia - https://www.theaftd.org

brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia

Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia

Episode 45- Communication through improv- Arts 7

Episode 45- Communication through improv- Arts 7

April 19, 2022

A Toronto-based mental health clinician and artist specializing in aging, older age, and dementia, Aynsley Moorhouse elaborates on how the fundamental principles of theatre improv, such as saying “yes, and”, are also central to caregiving and communicating with people living with dementia. Improv teaches care partners about living in the now and supporting one’s partner by making them “look good”. She now works with care partners at the Reitman Centre using the principles of improv to connect with the people living with dementia they are supporting.

Resources:

CreateProgram_ReitmanCentre.jpg

Website: www.dementiacarers.ca

https://www.brainandlife.org/articles/how-improvisational-techniques-help-engage-dementia-patients/

https://www.psychologytoday.com/ca/blog/play-your-way-sane/202004/improvisations-benefits-people-dementia

Balado 2- Vivre le moment présent et profiter de la vie

Balado 2- Vivre le moment présent et profiter de la vie

April 12, 2022

Marie-Reine et André sont tous deux natifs du Caire, en Égypte. Ils ont émigré au Canada en 1970 et habitent dans la région d’Ottawa. C’est là qu’ils ont fait leur carrière et élevé leur famille.

Il y a environ trois ans, André a été diagnostiqué avec la maladie à corps de Lewy, une forme de trouble neurocognitif qui partage de nombreuses similitudes avec la maladie de Parkinson.

Lors de notre rencontre, nous avons parlé du diagnostic d’André, de l’impact de ce trouble neurocognitif sur leur vie et des efforts qu’ils font, chaque jour, pour rester actifs physiquement et intellectuellement, et profiter du moment présent.

Young Onset Dementia: One family’s story Pt. 2: the children’s perspectives

Young Onset Dementia: One family’s story Pt. 2: the children’s perspectives

March 29, 2022

Jillian McConnell, our guest host, speaks with the Dineen children: Justin, Rebecca, and Peter who were just 12, 10, and 8 at the time of their mom’s diagnosis (9 years ago), about their experiences as younger children learning about their mother’s bvFTD diagnosis and now as teenagers / young adults. They discuss the unique challenges they faced and offer perspectives and strategies that continue to help them as they navigate their mother’s diagnosis and their relationship with her.

Part 1  is a conversation with Matt Dineen, their father.  

For more information: 

Young Onset Dementia: One family’s story on how a diagnosis impacted their lives- Season 4, Episode 42

Young Onset Dementia: One family’s story on how a diagnosis impacted their lives- Season 4, Episode 42

March 27, 2022

Our Young Onset series begins with a conversation between Matt Dineen, a father of three and husband from Ottawa, Ontario and Jillian McConnell, guest host and Knowledge Mobilization lead with brainXchange.  Nine years ago, Matt's wife Lisa was diagnosed with Behavioural variant Fronto-temporal dementia (bvFTD) at the age of 43.  

Matt and Jillian discuss what his experience has been like including: how Lisa was diagnosed, the challenges surrounding a diagnosis and symptoms at such an early age,  how it impacted him, Lisa and their children (who were ages 12, 10 and 8 at the time) and what strategies and resources Matt found most helpful early on in Lisa's diagnosis and now, years later.
For more information:

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

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

March 15, 2022

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.

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

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

March 8, 2022

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

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

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

January 27, 2022

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

 

From 3 to 4

From 3 to 4

December 22, 2021

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. 

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