Dementia Dialogue

Après trois mois de relâche, nous sommes enchantés de vous revenir avec notre série de balado Les troubles neuro-cognitifs : parlons-en! Cet automne, nous vous-présenterons une série de balados mettant en vedette des francophones de l’Ouest canadien. Dans le premier épisode de la série, l’animatrice Ingrid Gagnon s’entretien avec Gioia Sallustio à propos de résilience, de la proche aidance, de l’importance d’avoir accès à des ressources dans sa langue maternelle et de son attachement pour la communauté franco-albertaine.

After three months off, we are delighted to be back with our podcast series Neuro-cognitive disorders: let's talk about it! This fall, we will present a series of podcasts featuring Francophones from Western Canada. In the first episode of the series, host Ingrid Gagnon talks with Gioia Sallustio about resilience, close support, the importance of having access to resources in your mother tongue and her attachment to Franco-Albertan community.

Although Granville Johnson is living with dementia, he remains part of the community. Granville is a website designer, an artist, a musician (jimbe), a teacher (school and music), and a community dignitary, and he performs and speaks at community events. After he was diagnosed with dementia, he continued his community work introduced by the BC Alzheimer society. He was introduced to the Dementia Action Group and has become an advocate for himself and others living with dementia (creating a toolkit and dementia celebrate life t-shirt). a program about reducing stigma. He is currently in a band called “The day will come project,” and they have written the lyrics and music for their debut album to be recorded in June 2022. The album is about his life living with dementia. He is also writing his autobiographical, fictional novel, with the first volume finished in June to coincide with the release of his album. Through his work as an advocate, he has found his community. He works towards educating the public about dementia but also supporting his peers.

In the second episode, Alison and Granville describe a Toolkit that came out of a collaboration between the community and people living with the experience of dementia and is meant to help others understand their experiences in the hopes that engagement and inclusion of those with dementia will become normalized. 

Alison's Bio

Granville's Poem

In this episode of our Young Onset Dementia series, guest host Kathy Hickman of the brainXchange and Alzheimer Society of Ontario sits down with her niece Rachel Broderick of Owen Sound, Ontario, whose Mother and Grandmother both developed and died in their 40s of a rare form of Alzheimer’s Disease. (Familial) caused by a genetic mutation. Rachel, along with her brother (both teens at the time), cared

Resources

• Genetic Testing and Alzheimer’s Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease 

Lisa Loiselle speaks with Brenda Hounam and Colleen Whyte about friendship and dementia. Brenda was diagnosed with early onset dementia at age 53. She met Lisa in 2002 when they, and others planned the first ever conference by and for people living with dementia – A Changing Melody.

 Brenda and Lisa continue to work on many dementia advocacy initiatives and have formed a deep and meaningful relationship. The conversation includes the loss of friendships after a diagnosis, how participants in the study defined friends vs. acquaintances, leisure and how that helps people maintain friendships, how trust plays into relationships, and more.

Colleen Whyte is at Brock University. She and her colleagues, Darla Fortune (Concordia) and Rebecca Genoe (Regina) have studied friendship and dementia, published a number of articles, created a website and video vignettes. Brenda and Lisa have been working with them on a set of conversation tools.

Resources:

https://dementiaandfriendship.ca/

https://www.cbc.ca/listen/live-radio/1-66-the-morning-edition-sask/clip/15928672-university-regina-researcher-studies-maintaining-friendships-dementia-diagnosis

Our summer reprises focus on the theme of advocacy at the system, community service and individual level.  In this episode originally released in May 2018, Louise Milligan describes how her husband Gord was diagnosed with dementia while still teaching and raising two daughters. Louise speaks eloquently about the challenges their family faced and how she was able to use community resources to help. 

Our summer reprises focus on the theme of advocacy at the system, community service and individual level.  This first episode released in May 2020  outlines the connection between human rights and dementia, with particular attention to the impact of COVID-19 on long-term care. Mario is a dementia activist who is a co-creator of a Canadian Charter of Rights for Canadians with Dementia for the Alzheimer Society of Canada. Laura Tamblyn-Watts of CanAge is a lawyer and leading advocate for older people and Margaret Gillis leads the International Longevity Centre, Ottawa and is working to have Canada adopt the UN Convention on the Rights of Older Persons. Each gives their own advice on what listeners can do to promote human rights for people with dementia.

John and Cindy McCaffrey's motto is  “Have a good day, every day”. In this episode of our Young Onset Dementia series, guest host, Kathy Hickman of the brainXchange and Alzheimer Society of Ontario talks with them about their experiences of living with and caring for someone with young-onset dementia, how they have built a sense of community and continue to maintain a positive attitude by living in the moment.

John and Cindy discuss how they took action when they couldn’t find the “right” supports for someone living with young-onset dementia by creating a program called YouQuest. YouQuest focuses on providing intentional days for people living with young onset dementia based on providing real-life experiences, all guided by its participants.

Resources

YouQuest - https://youquest.ca/

Online Support Group for care partners of people with young-onset Dementia – Contact [email protected]

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

Nos invités pour cet épisode sont Véronique Legault et Pierre Roisné, respectivement Directrice générale du Regroupement des ainés de la Nouvelle-Écosse et Directeur général du Réseau santé Nouvelle-Écosse.

Véronique et Pierre collaborent depuis quelques années sur Villages culturels, un projet dont le but principal est d’identifier des méthodes, des approches et des activités culturelles qui pourraient être utilisées dans les centres de soins de longue durée en Nouvelle-Écosse afin de créer une atmosphère culturelle acadienne et francophone pour les résidents.

Ensemble nous avons parlé de la réalité de la communauté francophone et acadienne en Nouvelle-Écosse, des grands objectifs de leur projet et de leurs espoirs aussi pour les villages culturels.

Nous avons aussi demandé à Véronique de nous parler un peu de deux initiatives très intéressantes du Regroupement des ainés : lettres entre générations et cœur d’artiste!

Si vous aimez la musique, nous vous invitons à découvrir la chaine YouTube du Regroupement des ainés de la Nouvelle-Écosse.

Nous vous invitons également à visiter les sites Web du Regroupement des ainés de la Nouvelle-Écosse et du Réseau santé Nouvelle-Écosse pour plus d’information sur leurs services et ressources.

Lisa Loiselle speaks with filmmaker Chris Wynn who filmed his father’s struggles with Alzheimer’s in a documentary  “Forgetful Not Forgotten” and a 2nd feature documentary about young caregivers called “Much Too Young”.

Chris and Lisa speak candidly about how dementia is portrayed in TV and film, how it affects perceptions of Alzheimer's disease amongst the general population, and nurtures stigma. Chris also speaks about his own experience with his father’s illness and how it changed his life and inspired him to create his own documentary films.

Resources:

Forgetful not forgotten : http://livingwithalz.org/user_submitted_film/forgetful-not-forgotten/

Much too young : https://www.tvo.org/video/documentaries/much-too-young

Article: A slew of new movies including "Falling," "Supernova" and "The Father" try to put audiences in the shoes of someone suffering from dementia.: https://www.usatoday.com/story/entertainment/movies/2021/02/05/viggo-mortensen-falling-supernova-the-father-depict-dementia-realistically/4384359001/

   The Toronto Recollectiv provided the music in this episode. Recollectiv helps people with memory impairments gain a new social network, rediscover a sense of accomplishment and find joy through music-making. Resources are available to help form groups in other communities. Information is found https://www.recollectiv.ca/

A short video of how Recollectiv contributes to a member's quality of life "Leonard's Story" can be found at  https://www.youtube.com/watch?v=TFDK2Kfr9HA

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