Dementia Dialogue

Join guest host Jillian McConnell, Knowledge Translation Specialist at brainXchange, for an engaging discussion with Dr. Shabbir Amanullah, Division Chair and Clinical Director of Geriatric Psychiatry at Queen's University and Kingston Health Sciences Centre. In this conversation, Dr. Amanullah explores the relationship between sleep and dementia, highlighting how they influence one another and offering practical tips for enhancing sleep and overall cognitive well-being.  Shabbir Amanullah, DPM (CIP), MD (NIMHANS), FRCPsych (UK), CCT (UK), FRCP (Canada), DFCPA, FAPA, FIIOPM  Dr. Shabbir Amanullah currently works at Queen's University, Kingston as the Division Chair of Geriatric Psychiatry and Clinical Director.  He completed his DPM from the Central Institute of Psychiatry in Ranchi, MD Psychiatry from National Institute of Mental Health and Neurosciences in Bangalore and went to UK where he completed his MRCPsych and specialized in geriatric psychiatry.   He is currently the immediate past President of the Canadian Academy of Geriatric Psychiatry, is President Oxford County Medical Society, and serves as Chairman and Scientific Chair of the Indo Canadian Psychiatric Society. He was Programme Chair for the Ontario Medical Association section of Psychiatry and has won many awards including – The distinguished fellow of the Canadian Psychiatric Association and was honoured with the ‘Outstanding contributions to Geriatric Psychiatry award by the Canadian Academy of Geriatric Psychiatry.       Additional resources: Alzheimer Society of Canada: Sleep and Alzheimer's disease:  https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/providing-day-day-care/sleep   When Sleep Becomes an Issue: Tips and Strategies: https://alzheimer.ca/sites/default/files/documents/When-sleep-becomes-an-issue_Alzheimer-Society-Canada.pdf  

Mireille Ouellet habite à Toronto depuis plus de 50 ans. Femme indépendante et engagée, elle a commencé à faire du bénévolat à Place Saint-Laurent, une résidence à logements abordables pour aînés francophones de la région de Toronto. Elle a tellement aimé son expérience et les gens à Place St-Laurent qu'elle a décidé d'y emménager en 2007 lorsqu'elle a commencé à souffrir d'arthrite. Elle voulait également assurer sa sécurité, car elle soupçonnait qu'elle pourrait développer des problèmes de mémoire puisqu'il y a quelques cas de maladie d'Alzheimer dans sa famille.  Barbara Ceccarelli est Directrice générale des Centres d'accueil Héritage (communément appelé CAH), un centre de services communautaires pour personnes âgées et/ou vulnérables francophones vivant dans la région de Toronto. En plus des services qu'ils offrent à leurs résidents de Place Saint-Laurent, le CAH offre également de multiples services à la communauté tels que l'aide à domicile, un service de jour à Toronto et dans la région de Durham, un centre de vie active et une unité de soins de transition.  Pour en apprendre plus sur le CAH et leurs services, vous pouvez consulter leur site web disponible via ce lien ou les contacter directement par téléphone en composant le 416-365-3350. 

In Part Two of our Risk of Going Missing series, guest host Jillian McConnell, a Knowledge Translation Specialist with brainXchange, speaks with Provincial Constable Dave Holmes and Registered Nurse Shawna Marshall from the Mobile Crisis Response Team, with the Ontario Provincial Police.  PC Holmes, and Shawna talk about their roles as first responders when an older adult with dementia goes missing. They discuss the programs and tools they use, like Project Lifesaver, and the support they provide to the individual and their care partners.  Part One of the series is a conversation with Dr. Noelannah Neubauer, a researcher from the University of Waterloo.    Project Lifesaver International: https://projectlifesaver.org/     Project Lifesaver: Find a location near you: https://projectlifesaver.org/about-us/where-we-are/    AS Ontario: https://alzheimer.ca/on/en      

A significant number of Canadians experience cognitive and behavioral changes due to dementia, which can include difficulties with navigation and orientation, increasing the risk of getting lost.   Our Risk of Going Missing Series begins with a conversation between Dr. Noelannah Neubauer, a researcher from the University of Waterloo and Jillian McConnell, guest host and Knowledge Translation Specialist with brainXchange.  Dr. Neubauer and Jillian discuss a toolkit she and her colleagues have created to help people with dementia and their care partners understand the risks of becoming lost due to dementia-related changes as well as some helpful strategies to address these risks.   Noelannah Neubauer, PhD, OT Reg. (AB)  Dr. Noelannah Neubauer is an Occupational Therapist System Case Manager with Alberta Health Services in Edmonton Zone and is a part-time research assistant for the Aging and Innovation Program at the University of Waterloo, led by Dr. Lili Liu. Noelannah completed her PhD in Rehabilitation Science at University of Alberta in 2019, where she developed the Canadian Guideline for Safe Wandering. Areas of interest include community based-practice, health system navigation, dementia, aging, assisted technologies, and aging in place.     

You DO matter! Exploring the impact of mattering in caregiving.     Dr. Gordon Flett's research on mattering highlights a crucial aspect of psychological well-being, especially for caregivers. Mattering, the sense of feeling significant or valuable to others, can greatly influence one's sense of self-worth and overall mental health. For caregivers, this feeling of mattering can be self-generated, often through acts of giving and supporting others.   Dr. Flett emphasizes that by valuing oneself and acknowledging the efforts of those who provide care, individuals can foster a greater sense of hope. This not only benefits the caregiver but also enhances their resilience and adaptability, which are essential traits for managing the challenges associated with caregiving. The sense of mattering can thus play a pivotal role in sustaining motivation and emotional strength in caregiving roles.  Guest host for this webinar: Ann-Marie Kungl, CEO, Alzheimer Society-Simcoe County.     

Notre invitée pour ce balado est Karine Wibrin. Karine est ergothérapeute pour le Centre de santé communautaire Hamilton/Niagara où elle travaille avec une clientèle diversifiée, dont des personnes atteintes de troubles neurocognitifs majeurs.   Ensemble, nous avons parlé de sécurité et de conduite automobile, en particulier en ce qui concerne les personnes atteintes de troubles neurocognitifs majeurs. Comment savoir quand il est temps de renoncer à son permis de conduire ? Quels sont les signes avant-coureurs que les membres de la famille et les proches aidants devraient rechercher ? Quand et comment doit-on en discuter avec son proche ?   Karine Wibrin Biographie Karine a fait ses études en ergothérapie à l'Université de Montréal. Elle a travaillé dans divers centres hospitaliers et centres de réadaptation à Montréal. Elle a ensuite déménagé en Ontario où elle a travaillé 2 ans dans une clinique privée avec des personnes accidentées de la route. Elle travaille actuellement pour le Centre de santé communautaire Hamilton/Niagara depuis 14 ans. 

Mona Loffelmann, founder and executive director created African Family Revival Organization (AFRO) in 2015 because of a disconnect she witnessed between youth and seniors and the larger community. According to Mona, seniors don't have access to the things most of us do, for example, health and allied health services, due in part to a language barrier or a fear of going out into the community. Some may have dementia and others are just isolated. Mona felt compelled to make a change. During our conversation, Mona speaks about the many programs offered by AFRO to both seniors and young people in the Waterloo Region and surround areas such as Guelph. AFRO received funding from Red Cross which allowed them to create a program whereby youth would support seniors by dropping off supplies, which turned into a buddy program. The organization received further funding from the Schlegel-UW Research Institute for Aging (RIA) and the Government of Canada to create an in-person program that brings together seniors and youth. This episode also includes a conversation with Ms. D (or Diney), a 75 year old “Senior Ambassador” at AFRO. Ms. D has become a spokesperson helping to connect AFRO with other seniors in the community, and Elise who is a student involved in AFRO. They both talk about how their relationship is mutually beneficial.   Resources: Afrofamily.ca Phone (548)-889-3506 (519)-223-AFRO (2376) Address 737 Belmont Ave. W, Suite 4 Kitchener, Ontario, N2M 1P3   About the guest: Mona Loffelmann, Founder and Executive Director, African Family Revival Organization (AFRO) Over the past decade, Mona has been working to ensure that all members of our community feel valued, included, and heard. In this role, she is be responsible for developing and implementing outreach programs that engage black and other marginalized groups, building relationships with key stakeholders, and working to create a more inclusive and equitable community. Mona possesses adequate communication, organizational, and resilience skills. She is enthusiastic about her work and continues to collaborate with other organizations to provide community-oriented services. More importantly, Mona is constantly looking to collaborate with other organizations to track and measure the success of outreach efforts, making recommendations for improvement as needed. Mona has a strong understanding of the importance of diversity, equity, and inclusion and she strives to educate others through presentations and training programs. In fact, Mona has completed a number of training programs including; “Train the Trainers Resilience Training” in partnership with Family and Children's Services of Waterloo Region. She has also completed “Intercultural Leadership Training” with Muslim Social Services of Waterloo Region. Mona is the Project Coordinator and Cultural Navigator for AFRO's Support Through Generations program, as well as the Executive Director of AFRO. Mona, along with the other AFRO board members, contributes to major decisions and changes that benefit the organization and community as a whole.    

This episode is a continuation of the Intergenerational Engagement series of Dementia Dialogue hosted by Lisa Loiselle. Guests include Albin Soni, a student at University of British Columbia (UBC), Mario Gregorio, a passionate advocate living with dementia, and Lillian Hung, an Associate Professor in the School of Nursing at UBC.  In 2020, Dr. Hung received funding to create the Innovation in Dementia and Aging (IDEA) Lab at UBC. The purpose of the IDEA Lab is to bring together patients, family partners, researchers, health system planners, and students (as co-researchers) to create technology that will assist in the care of people with dementia and older adults, teach new skills, and prepare students for professional advancement.   During this episode, Lisa and her guests speak about the inspiration for IDEA Lab, its goals and how Mario and Albin are involved as mentor (Patient engagement partner) and mentee, respectively.  They discuss the process of ideation to creation of their technology projects through patient-oriented research, that also has the added benefit of intergenerational engagement. They also speak about their motivation to get involved in IDEA Lab. Dr. Hung also speaks about the importance of inclusion in their research and making the work important for everyone, leaving no one behind.   Beyond the research, the IDEA Lab team has built an incredible bond with each other and through their engagement, they are learning from each other, reducing stigma, and removing barriers.    Biographies:  Albin Soni (Research Assistant | UBC IDEA Lab). is currently a fourth year Biomedical Engineering student at UBC, with a focus in cellular engineering and medical devices. He is also a research assistant with the UBC Innovation in Dementia and Aging (IDEA) Lab. At IDEA Lab he pursues his interests in healthcare accessibility and innovation, while at the same time helping those with dementia and related conditions. As a long-term care home volunteer, he has become familiar with some of the hardships experienced by these individuals. The work at IDEA lab is so important to address these hardships. Outside of IDEA Lab, Albin can be found listening to music, hanging out with friends, and finding new foods to eat.   Mario Gregorio is a passionate advocate to create awareness, reduce stigma and educate the public about neurocognitive disorder or dementia. He is a member of several committees that encourage inclusiveness and accessibility for people with hidden disabilities and a recognized public speaker in universities across Canada and in the United States. He is a coauthor of several research papers about digital technology and robotics and a mentor for the University of British Columbia IDEA Lab and Simon Fraser University School of Gerontology. And is actively involved with community projects to help alleviate loneliness and foster social connections. He enjoys taking pictures during his morning walks and loves gardening.  Lillian Hung is an Associate Professor at the University of British Columbia (UBC) School of Nursing; she holds a Canada Research Chair in Senior Care. She is interested in patient-oriented research and the innovation of care for those living with dementia and their caregivers. Through the creation of the IDEA Lab, she has brought together a team of enthusiastic young students, along with patient and family partners who are pursuing innovation in dementia and aging research through co-designing of projects and sharing in the benefits of collaborative research.  Resources for website:  https://idea.nursing.ubc.ca/ 

Notre série de balados qui s'adresse spécifiquement aux francophones du Canada, vise à inspirer, informer et aider à réduire la stigmatisation entourant les troubles neurocognitifs majeurs.    Dans ce balado, nous apprenons comment nos pensées influencent notre bien-être et comment briser le cycle de pensées négatives qui nous empêchent de vivre notre vie pleinement.    Notre invitée est Mireille Huneault, responsable des services en français pour l'Association canadienne pour la santé mentale pour la région de Durham en Ontario. Mireille est également instructrice certifiée en premiers soins en santé mentale et enseigne une série d'ateliers qui s'intitule « Vivre sa vie pleinement ».  

In this continuation of the Intergenerational Engagement series, host Lisa Loiselle speaks with Dana Zummach and Kate Dupuis.  Kate Dupuis is the Schlegel Innovation Leader in Arts and Aging at Sheridan College and the Schlegel-UW Research Institute for Aging. She is based at the Sheridan Centre for Elder Research in Oakville, Ontario and is a Professor in Sheridan's Faculty of Applied Health and Community Studies. After receiving her Ph.D. in Psychology from the University of Toronto, Kate completed a postdoctoral fellowship in the Neuropsychology and Cognitive Health and Hearing Services programs at Baycrest and became registered with the College of Psychologists of Ontario as a clinical neuropsychologist.   Kate is a clinician-scientist whose work lies at the intersection of arts, health, and aging. In her research, Kate seeks to understand how arts participation can benefit all domains of health and well-being for older adults and those who care for them, and she explores how to encourage and support creativity and self-expression across the lifespan. During the COVID-19 pandemic, Kate's work expanded to explore the experiences of moral distress and moral injury in staff working in retirement and long-term care homes. She uses arts and creativity techniques to address the health and well-being of staff, with an aim towards enhanced resilience and recovery.   Dana Zummach is the manager of Dementia Programs at the Schlegel-UW Research Institute for Aging and has been involved with the Supporting Inclusion through Intergenerational Partnerships (SIIP) project since 2019. The SIIP project reduces social isolation, and builds meaningful relationships that span across generations. SIIP works with organizations across Waterloo Region to provide opportunities for older adults living with dementia, their care partners, and youth to connect and interact in purposeful ways. Dana has over 15 years of experience in public health research, program evaluation, and project management and holds a Bachelor of Science in Health Studies and Gerontology and Master of Science in Public Health and Health Systems both from the University of Waterloo.  In this episode, Lisa, Dana and Kate discuss several Intergenerational programs that have been supported by SIIP funding through the RIA and programs that Kate has been involved in creating and supporting through her research. They also explore why these interactions are so important and meaningful to both the young and their “grand-friends.” Many lessons were learned from the programs being supported by SIIP funding and as a result, Dana shares some best practices and how to access key resources for training purposes and also program development and/or management. Finally, some words of advice are shared about program sustainability.  

Balado sur Les Cafés Mémoire de la Nouvelle-Écosse Dans ce balado, nous allons en apprendre un peu plus sur les Cafés Mémoire. Les Cafés Mémoire ont été créés dans les années 1990, par un psychologue néerlandais, dans le but de briser l'isolation et la stigmatisation des personnes vivant avec des troubles neurocognitifs majeurs en créant des occasions de rencontre et d'échange pour les personnes âgées et leurs proches aidants.  Notre invitée, l'artiste néo-écossaise Élizabeth Sircom, est la Conseillère artistique provinciale des Cafés Mémoire de la Nouvelle-Écosse.   Élizabeth est une artiste multidisciplinaire, elle fait de la peinture, du dessin et de la sculpture en terre cuite avec un intérêt particulier pour le portrait. Elle est également musicienne et enseigne le violoncelle.  Nous vous invitons à découvrir les œuvres d'Élizabeth en visitant son site web au : https://www.elizabethsircom.com/.   Pour plus d'informations sur les Cafés Mémoire de la Nouvelle-Écosse, veuillez consulter leur site web au : https://memorycafens.ca/fr/.   Pour trouver un Café Mémoire près de chez vous, contactez la Société Alzheimer de votre région. Vous pouvez également consulter ce répertoire en ligne au : https://www.memorycafedirectory.com/ et cliquer l'onglet « Find a Memory Cafe ».   

In this episode of Dementia Dialogue titled, ‘It Started with Oma,' the second in a series of conversations about Intergenerational Engagement, host, Lisa Loiselle speaks with Matthew Vorstermans and Ann-Marie Kungl.   Matthew lives in Creemore, Ontario, and spends his time volunteering. For many years he has supported residents at a local nursing home, reading to children at the public library and most passionately, volunteering to support those living with dementia.   Matthew got involved in intergenerational activities as a young grandson whose Oma was living with dementia in another country. Since then he has been a passionate volunteer for the Alzheimer Society of Simcoe County. This May he will be volunteering for the 18th straight year as a participant in the IG Wealth Management Walk for Alzheimer's.   Ann-Marie Kungl has witnessed Matthew's passion and commitment to supporting those living with dementia since she became the CEO of the Alzheimer's Society of Simcoe County. Ann-Marie speaks about the importance of intergenerational connection, programs being offered by Simcoe County and of course the upcoming Walk.  

Originaire de la péninsule Acadienne, Marie-Paule B.-Leblanc habite aujourd'hui à Moncton où elle occupe le poste de Coordonnatrice des événements et philanthropie pour la Société Alzheimer du Nouveau-Brunswick.   C'est une cause qui lui tient à cœur puisqu'elle est proche aidante pour son père qui vit avec la maladie d'Alzheimer.  Ensemble nous avons parlé de son rôle de proche aidante, de l'importance d'accéder aux ressources disponibles, et de la marche annuelle pour l'Alzheimer IG Gestion de Patrimoine.  Link : Lien pour s'inscrire à La marche pour l'Alzheimer IG Gestion de patrimoine   

Nos invitées pour ce balado sont Josée Desrochers-Leduc et Gisèle Charbonneau. Josée est Coordonnatrice en éducation à la Société Alzheimer de Cornwall et région; Gisèle, pour sa part, est proche aidante pour sa sœur aînée atteinte de troubles de mémoire et d'anxiété.  Ensemble nous avons parlé du programme Esprit en actionMD - connu en anglais sous le nom Minds in Motion©. Grâce à ce programme, la personne atteinte de troubles neurocognitifs et son proche aidant peuvent participer à des activités physiques et sociales centrées sur le développement des compétences personnelles.  Pour plus de renseignements sur ce programme, nous vous invitons à communiquer avec la Société Alzheimer de votre région. 

On this episode of Dementia Dialogue, "Mind over Matter: Game Changer" we speak with Caroline Cameron, host of Scotiabank Wednesday Night Hockey on Sportsnet. Caroline shares her experience and connection to her grandmother, who lived with dementia, why she feels it is important to maintain a healthy lifestyle, and why it is never too early to start caring, as well as some insight to what routines she does to reduce her risk of developing the disease.     Biography for Caroline Cameron:  Caroline Cameron is a Canadian television sportscaster known for her role as host of Scotiabank Wednesday Night Hockey on Sportsnet. Caroline also hosts the pre-game program Hockey Central and is a rink-side reporter for Hockey Night in Canada.  Inspired by her late Grandma Shirley who lived with vascular dementia, Caroline has been involved in dementia advocacy work for many years, volunteering in seniors' homes and participating in education and awareness campaigns.  In 2015, she supported the Alzheimer Society of Canada's Dementia Friends Canada initiative, and in January 2024, she was an ambassador for the Alzheimer Society of Ontario's January Awareness Campaign.  Read Caroline's full story here. https://alzheimer.ca/on/en/whats-happening/news/carolines-story    We want to hear from our Dementia Dialogue listeners. Please complete our listener survey: https://www.surveymonkey.com/r/C8QHB37

In this episode, Lisa Loiselle speaks to a group of people involved in the Circle of Music, an intergenerational choir for people living with dementia, their care partner, and local high school students in Kitchener-Waterloo in Southwestern Ontario.   

On parle souvent de l'importance du soutien de la communauté pour mieux vivre avec un trouble neurocognitif. C'est ce dont nous parle Maria Lepage une franco-saskatchewanaise bien impliquée dans sa communauté qui veille sur son mari, Henri, atteint de la maladie d'Alzheimer.

In the third and final podcast of our series on Dying and Dementia, we met with Dr. Kathy Kortes-Miller, MSW, PhD., author of Talking About Death Won't Kill You.  Kathy is an associate professor in the School of Social Work and the Director of the Centre for Education and Research on Aging and Health at Lakehead University, Thunder Bay, Ontario Canada. She is the Lakehead University Research Chair on Aging and End of Life and is committed to improving the care provided at the bedside and in the community. She has a passion for palliative care and improving end-of-life care for all.  During this episode, we discuss the importance of having end-of-life conversations, death literacy, and what to consider when planning for end-of-life.

Comment aider un proche atteint d'un trouble neurocognitif majeur quand on habite à plus de 5,000 kilomètres dans une région éloignée des grands centres urbains? Pour en apprendre plus sur cette problématique, j'ai interviewé deux Yukonnais : Sandra St-Laurent et Paul Davis. Sandra est Québécoise de naissance et Franco-yukonnaise d'adoption. Elle est arrivée au Yukon, il y a plus de 25 ans, et est tombée en amour avec la région et ses habitants. Sandra a été proche aidante à deux reprises. La première fois, c'était il y a environ 17 ans, lorsque son père a reçu un diagnostic de cancer, et plus récemment pour sa mère qui est décédée en juillet 2022 de la maladie d'Alzheimer. Paul Davis, quant à lui, s'est établi au Yukon en 1995. Après plusieurs années dans la fonction publique et l'enseignement, il se dévoue maintenant à la réalisation de courts métrages. Son dernier film, Le Loon Ranger des huards, a été présenté récemment au Dawson City International Short Film Festival ainsi qu'au Festival international du Film francophone de Toronto. Bien qu'il ait grandi dans une famille anglophone, Paul porte un grand amour pour la langue française qu'il étudie depuis sa jeunesse. Malheureusement, Paul et moi avons eu quelques problèmes techniques lors de notre conversation qui ont grandement affecté la qualité sonore de l'entrevue. Sandra St-Laurent est la Directrice du Partenariat communauté en santé au Yukon. Gestionnaire et artiste en creation littéraire, elle aime mettre à profit ses connaissances dans des milieux dynamiques favorisant la créativité et se démarquant par l'excellence et le souci d'intégrer les meilleures pratiques et l'innovation.

Nos invitées pour ce balado sont Hélène Carbonneau, professeure au Département d'études en loisir, culture et tourisme à l'Université du Québec à Trois-Rivières et Sandra Harrisson, professeure agrégée à l'École des sciences infirmières de la Faculté des sciences de la santé de l'Université d'Ottawa. Hélène et Sandra collaborent depuis plusieurs années maintenant à l'élaboration d'un cadre plus humain pour les services et les soins des personnes atteintes de troubles de mémoire. Ce cadre, qu'elles appellent l'approche par le plaisir©, optimise la qualité de vie des clients en misant sur leur bien-être psychologique. Dans cet entretien, Hélène et Sandra nous parlent de cette nouvelle approche et de ses impacts positifs sur les clients, les familles, les proches aidants et le personnel soignant. Pour plus d'information sur cette approche, vous pouvez communiquer directement avec Hélène et Sandra. Si vous êtes un proche aidant ou un organisme communautaire, veuillez contacter Hélène par courriel à : Helene.Carbonneau@uqtr.cao  Si vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca Voir Saison 3 Episode 2-Biographies et photos  

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. Voir Balado 1 - Biographies et photos

We continue our series on Dying and Dementia, with Ron Posno. Ron lives with Alzheimer's Disease and Vascular dementia. He shares his experience of living with dementia, why he thinks having conversations about our own death is important and what this means for him as someone living with dementia. Ron has been an advocate of access to Medical Assistance in Dying (MAID) for people living with dementia. We talk about what a highly personal decision this is and why, for Ron, his wish is to access MAID when his disease progresses, if it is available to him.  

In this episode, the first in a new series on Dying and Dementia, guest host Jillian McConnell, Knowledge Translation Specialist with the brainXchange, sits down with Anne Marie Stoneburgh a Death Doula. Many people avoid this topic in our death-averse society and yet we are all “living while we are dying”. Annie explains what a Death Doula, or End-of-Life Care Facilitator is and the role they might play in supporting individuals and families through the dying process. The stories she shares highlight the importance of having conversations early and often about dying. By talking about our wishes with the people in our lives we can demystify dying and support death experiences that honour those wishes.  

In this second of 2 episodes which marks The National Day of Truth and Reconciliation,  Lisa Loiselle talks with Laura Alfaro and Danielle Alcock who both work in Indigenous health and were involved in the Circle of Care, which is a project that addresses the needs of Indigenous caregivers of people living with dementia. Laura was the project officer at the Native Women's Association of Canada leading the project and Danielle facilitated the talking circles during the program. Danielle has also been a caregiver to her father for the past ten years. In part 1, Laura and Danielle laid the groundwork for understanding dementia and the caregiving role from an Indigenous perspective. In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.    Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf Laura Alfaro was the project lead for the Native Women's Association of Canada's Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.  Danielle Alcock  spirit name is 'Shining Water') is a member of Mnjikaning First Nation whosePhD at focused on storytelling of Indigenous female caregivers for a loved one with memory loss. Danielle was a front line provider in Indigenous health working with clients across the lifespan. and continues to work in Indigenous health focused on improving culturally safe care and supporting primary care in Southwestern Ontario. 

This episode is a reprise of Episode #41 and features a conversation Lisa Loiselle had with Mike Belleville and Mary Fridley of the  Reimagine Dementia - A Creative Coalition for Justice      The reprise honours the launch of its "Taking it to the Streets" Campaign to  “Shatter the silence about dementia Creatively transform the journey of dementia for everyone Build a world (and systems of care) in which diagnosis is not the end of life, but a starting point for joy, humanity, growth and new possibilities" To learn more about the Coalition go to: https://www.reimaginingdementia.com/ To learn more about the campaign, go to: https://www.reimaginingdementia.com/blog/prtakingstreets  

In this 2-part podcast Lisa Loiselle talks with Laura Alfaro and Danielle Alcock who  both work in Indigenous health and were involved in the Circle of Care, which is a project that addresses the needs of Indigenous caregivers of people living with dementia. Laura was the project officer at the Native Women's Association of Canada leading the project and Danielle facilitated the talking circles during the program. Danielle has also been a caregiver to her father for the past ten years. In part 1, Laura and Danielle lay the groundwork for understanding dementia and the caregiving role from an Indigenous perspective. In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.    Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf Laura Alfaro was the project lead for the Native Women's Association of Canada's Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.  Danielle Alcock  spirit name is 'Shining Water') is a member of Mnjikaning First Nation whosePhD at focused on storytelling of Indigenous female caregivers for a loved one with memory loss. Danielle was a front line provider in Indigenous health working with clients across the lifespan. and continues to work in Indigenous health focused on improving culturally safe care and supporting primary care in Southwestern Ontario. 

In this episode, Pat Shanahan speaks with Maggie Perquin.  Maggie retired early from teaching to become the carer for her wife Ruth who have been together for 27 years, married for 15 of those and between them they have 15 grandchildren.  Ruth, also a retired teacher, had been struggling with cognitive issues for about 8 years when she was finally diagnosed with vascular dementia in 2018.  Following the diagnosis, Ruth and Maggie connected with the Alzheimer Society Southwestern Partners.  While they were well received as a same-sex couple, they realized they were the only out participants in their group. Maggie approached the Alzheimer Society to consider starting a group to support 2SLGBTQ clients and caregivers.  The first two sessions of the group had carers of 16 Alzheimer clients.  Maggie has invited any listeners who might be interested in contacting her by email at l nanastable675@gmail.com Resources: Ruth and Maggie share their story in this video. https://on.alz.to/site/SPageNavigator/ASLM/2021/Cabin_Fever/ASLM_Cabin_Fever_2021.html;jsessionid=00000000.app20058b?NONCE_TOKEN=F25504F441FB0A8DA0A27C9905683678 Dementia as an Animal https://www.youtube.com/watch?v=ynAXxAO4pws Alzheimer Society Southwest  Partners https://alzswp.ca/ Ontario Alzheimer Society https://alzheimer.ca/on/en National Institute on Aging /Egale Canada https://2slgbtqi-aging.ca/tag/dementia/

Arne Stinchcombe chats with researchers doing work with lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2S+) 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/ Resources for this episode can be found under the following sections on our resource page: LGBTQ2S+

Pour ce dernier épisode de notre deuxième saison, nous avons eu une conversation fascinante sur les nouveaux modèles de résidences pour aînés vivant avec un trouble neurocognitif majeur avec le professeur Philippe Voyer. Comment est-ce qu'on peut repenser nos modèles de résidences pour les rendre plus accueillantes pour les aînés atteints de trouble de mémoire et leurs familles? Quels sont les détails auxquels il faut penser lors de la planification des différentes pièces qui composent une résidence pour aînés vivant avec un trouble neurocognitifs majeur? Quelle est la satisfaction du personnel soignant qui travaille dans ces nouveaux milieux? C'est ce que nous apprenons dans le balado qui suit! Philippe Voyer, inf., Ph.D. est professeur titulaire et Vice-doyen aux études de premier cycle et à la formation continue de la Faculté des sciences infirmières de l'Université Laval. Dans le cadre de ses fonctions, monsieur Voyer s'implique dans l'enseignement et la formation continue, la recherche et la pratique clinique. Il est l'auteur de plusieurs livres utilisés au Québec et en Europe qui se sont mérités de prestigieux prix dont le Prix du ministre de l'Éducation. Il est le chercheur principal ayant créé l'outil RADAR permettant de détecter les signes du delirium (outil maintenant disponible en 7 langues (https://www.philippevoyer.org/radar-international). Il a aussi été l'expert mandaté par le ministère de la Santé et des services sociaux dans un projet vitrine visant à transformer des CHSLD classiques en CHSLD Alzheimer. Il était aussi membre du comité mandaté par le MSSS pour produire le Plan Alzheimer et a co-présidé la création des lignes directrices québécoises sur la prise en charge des SCPD. Il est conseiller aussi pour le ministère des Aînés et des proches aidants pour la réalisation des Maisons des aînés. Enfin, il a participé à la création des Maisons l'étincelle et Humanitae qui sont des milieux de vie pour la clientèle vivant avec la malade d'Alzheimer. Ces milieux novateurs ont permis de tester diverses technologies visant le bien-être et la sécurité des résidents. Pour plus de détails :  https://www.philippevoyer.org/biographie

In this episode, Pat Shanahan speaks with Barbara Machalik and Mary Connell. Barbara is the Executive Director of Academics, Community Relations and Programming at the Long Term Care homes operated by the Rekai Centres at Wellesley Central Place and Sherbourne Place in downtown Toronto. Barbara tells us about the planning and launch of the Rainbow Wing at their Wellesley location in 2022. The Wing is a pod of 25 resident rooms for members of the 2SLGBTQ communities but contains common space available to all the residents of the facility who are allies or are also members of the 2SLGBTQ communities. Mary is a consulting nurse who specializes in the area of emotion-based care and client centred care especially for those experiencing dementia. The Rekai Centres have been working with Mary to train staff and assist the staff developing care approaches that respond to the individual residents, their lives and familiar activities to reduce anxiety.  Mary shares examples and stories of how emotion-based care is being used to care for members of the 2SLGBTQ communities who are experiencing dementia.   The following resources can be read/viewed found through links  www.rekaicentres.com Many LGBTQ seniors entering long-term care hide their identities. The ‘Rainbow Wing' aims to change that | The Star Long-term care home unveils 'Rainbow Wing' for LGBTQ2 residents in Toronto | CBC News Is this the future of queer elder care? | Xtra Magazine Other Cities Have Housing for Queer Seniors. Why Not Vancouver? | The Tyee Rainbows to welcome everyone at Rekai Centre Toronto - YouTube  

Comment aider un proche atteint d'un trouble neurocognitif majeur quand on habite à plus de 5,000 kilomètres dans une région éloignée des grands centres urbains? Pour en apprendre plus sur cette problématique, j'ai interviewé deux Yukonnais : Sandra St-Laurent et Paul Davis. Sandra est Québécoise de naissance et Franco-yukonnaise d'adoption. Elle est arrivée au Yukon, il y a plus de 25 ans, et est tombée en amour avec la région et ses habitants. Sandra a été proche aidante à deux reprises. La première fois, c'était il y a environ 17 ans, lorsque son père a reçu un diagnostic de cancer, et plus récemment pour sa mère qui est décédée en juillet 2022 de la maladie d'Alzheimer. Paul Davis, quant à lui, s'est établi au Yukon en 1995. Après plusieurs années dans la fonction publique et l'enseignement, il se dévoue maintenant à la réalisation de courts métrages. Son dernier film, Le Loon Ranger des huards, a été présenté récemment au Dawson City International Short Film Festival ainsi qu'au Festival international du Film francophone de Toronto. Bien qu'il ait grandi dans une famille anglophone, Paul porte un grand amour pour la langue française qu'il étudie depuis sa jeunesse. Malheureusement, Paul et moi avons eu quelques problèmes techniques lors de notre conversation qui ont grandement affecté la qualité sonore de l'entrevue.   Sandra St-Laurent est la Directrice du Partenariat communauté en santé au Yukon.   Gestionnaire et artiste en creation littéraire, elle aime mettre à profit ses connaissances dans des milieux dynamiques favorisant la créativité et se démarquant par l'excellence et le souci d'intégrer les meilleures pratiques et l'innovation. Au niveau de la création littéraire et des projets d'arts visuels, elle aime participer à des projets stimulants qui font appel à la créativité et la collaboration, permettant la rencontre avec d'autres artistes et auteurs du milieu. Ses spécialités incluent la santé publique; la promotion de la santé; le genre et le développement; le développement local et international; les expositions collectives visuelles; la redaction et la publication de nouvelles (adultes, jeunesse) et le haiku ainsi que la redaction et la publication de contes pour les enfants et les jeunes. Paul Davis est un artiste en arts médiatiques qui habite à Whitehorse au Yukon. Vous pouvez le rencontrer à pied, à vélo, et en canot!        

After listening to a group of women living with dementia talk about their group, Dementia Sisterhood, if you are interested, contact Dr. Elaine Wiersma at ewiersma@lakeheadu.ca. They meet virtually via Zoom to share their lives, support one another and derive encouragement from the solidarity they experience    You may want to check out our series on Women & Dementia https://www.dementiadialogue.ca/women--dementia and listen to other episodes on this theme and check out the resources below A short video called “Women with Dementia Living Strong” https://www.youtube.com/watch?v=aG8BKSyFUK0 Bamford, S. (2011). Women and dementia—not forgotten. https://ilcuk.org.uk/wp-content/uploads/2019/01/Women_and_dementia.pdf Alzheimer Society of Canada https://alzheimer.ca/on/sites/on/files/documents/2015%20Media%20Releases-.pdf Alzheimer Society UK—Why is dementia different for women? https://www.alzheimers.org.uk/blog/why-dementia-different-women Alzheimer Disease International—Women and Dementia: A Global Research Review https://www.alzint.org/resource/women-and-dementia-a-global-research-review/

Native de l'Abitibi-Témiscamingue dans la province de Québec, Annie Bourret habite en Colombie-Britannique depuis près de 30 ans.  Au printemps 2019, la mère d'Annie, l'autrice québécoise Anne-Michèle Lévesque, subit un AVC qui la laisse avec des séquelles : des troubles de mémoire, perte de langage, fatigue mentale et physique. Elle quitte donc le Québec et s'installe chez sa fille à Ashcroft en Colombie-Britannique. Son état de santé se détériore rapidement, les problèmes s'accumulent; si bien qu'en juin 2020, Mme Lévesque demande l'aide médicale à mourir. Annie doit maintenant accompagner sa mère dans ce processus.   Ensemble, nous avons parlé de son expérience en tant que proche aidante et du chemin qu'elle a parcouru avec sa mère à partir du moment où cette dernière a demandé l'aide médicale à mourir.   Lien vers la Biographie et photo d'Annie

Lisa Loiselle speaks with Laura Middleton and Bill Heibein about the DREAM (Dementia Resources on eating, activity, and meaningful inclusion) project. Laura Middleton is an Associate Professor at the University of Waterloo whose work looks at the role of physical activity and other lifestyle strategies like healthy eating, and social engagement in promoting the well-being of people living with dementia,  as well as reducing the risk of dementia.. Bill Heibein has lived with a diagnosis of dementia for 24 years. He lives near Thunder Bay and owns and operates a farm. He has been involved in many research projects with various universities and researchers. Bill decided to get involved in the DREAM project because of his interest in items like physical activity. Bill believes that physical activity is the reason he continues to live well with dementia. Resources: www.dementiawellnesscanada.com Laura Middleton's contact info -  lmiddlet@uwaterloo.ca

In the second part of the Community Engagement series, we meet Andréa Monteiro,  a researcher,  educator, nurse, documentary filmmaker and social justice advocate. Her father lived his final years with dementia. As the community research coordinator, Andrea walked alongside community partners, witnessing, dialoguing, and serving as a sounding board for different communities and groups discussing inclusion and witnessing questions that are unique to each. Andréa shares her experience working with communities and some challenges she witnessed. https://www.buildingcapacityproject.com/ https://www.flippingstigma.com/  

Dans cet épisode, Dre Nouha Ben Gaied – Directrice en recherche et développement et qualité des services à la Fédération québécoise des Sociétés Alzheimer – nous parle du projet Canada proche allié Alzheimer. Ce projet, qui a pour but de favoriser l'inclusion des personnes atteintes de troubles neurocognitifs dans nos communautés, est un partenariat entre les Sociétés Alzheimer du Canada, de la Colombie-Britannique, de la Saskatchewan et de l'Ontario. Cliquez sur le lien ci-dessous, si vous souhaitez en apprendre plus sur le projet Canada proche allié Alzheimer! Canada proche allié Alzheimer (https://alzheimer.ca/fr/agissez/devenez-allie-des-personnes-atteintes-dun-trouble-neurocognitif/canada-proche-allie-alzheimer)  

In part 1 of a two-part series, Lisa Loiselle speaks to Alison Phinney, PhD RN, and Lynn Jackson, RN, a person with lived experience of dementia. They work on the  Building Capacity Project, a partnership between researchers at the University of British Columbia and Lakehead University, and the Westside Seniors Hub in Vancouver and the North West Dementia Working Group in Thunder Bay. Alison is from New Brunswick and now lives in British Columbia and has been doing research together with people with dementia for 30 years. As a nurse, she became very curious about what their experience was like because it was very hard for them to tell her. That curiosity and commitment have stayed with her. Lynn grew up in Vancouver but now lives in Sydney, BC. Twenty-two years ago, she was diagnosed with Frontal temporal dementia (FTD). Since then, she has been engaged in advocacy work with people living with early stages of dementia, and is as busy as ever! Links to https://www.buildingcapacityproject.com/ https://www.flippingstigma.com/  

In this second episode on biomarkers, Ann Bil, a woman living with dementia, and Kristi Wijnsma, her daughter, discuss why they enrolled in the IMPACT-AD, their experience, and how they used the results from the investigation. Khushbu Patel, a research associate of Dr. Mari DeMarco, the principal investigator, talks about some other participants' experiences and resources available at www.impactad.org/resources.Kristi mentions the help provided through First Link, a service of the Alzheimer Society of British Columbia and other Alzheimer Societies in Canada. The analysis offered by Dr. DeMarco's lab at St.Paul's Hospital in Vancouver is available in Canada to consulting physicians, e.g., neurologists, geriatricians, and psychiatrists,  who have patients with symptoms of dementia and may benefit from the test. It is not a screening test for people without symptoms. A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update. For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel. This episode is sponsored by Roche Canada.

Dr. Mari DeMarco, Ph.D., is a researcher at the University of British Columbia concerned with how the diagnoses of neurodegenerative diseases can be improved by discovering and using biomarkers. Led a study on biomarkers. Her lab aims to create better tools for the timely diagnosis of Alzheimer's disease, frontotemporal degeneration, and related disorders and make these tools easily accessible to those that need them. Dr. DeMarco talks about the use of the amyloid beta peptide and tau biomarkers in dementia and specifically Alzheimer's Disease and the results of the one arm of the Impact-AD study on clinical management. These two biomarkers are found in cerebral spinal fluid. They offer patients and healthcare providers a definitive diagnosis of Alzheimer's Disease, something that previously eluded many individuals.  The analysis offered by Dr. DeMarco's lab at St. Paul's Hospital in Vancouver is available in Canada to consulting physicians, i.e., neurologists, geriatricians, and psychiatrists, who think that a patient who has symptoms of dementia would benefit from the test. It is not a screening test for people without symptoms. Additional Information:  Information about the study can be found: at https://www.impactad.org/resources. A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update.   For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel. Roche Canada sponsors this episode.

Nos invitées pour ce balado sont Hélène Carbonneau, professeure au Département d'études en loisir, culture et tourisme à l'Université du Québec à Trois-Rivières et Sandra Harrisson, professeure agrégée à l'École des sciences infirmières de la Faculté des sciences de la santé de l'Université d'Ottawa. Hélène et Sandra collaborent depuis plusieurs années maintenant à l'élaboration d'un cadre plus humain pour les services et les soins des personnes atteintes de troubles de mémoire. Ce cadre, qu'elles appellent l'approche par le plaisir©, optimise la qualité de vie des clients en misant sur leur bien-être psychologique. Dans cet entretien, Hélène et Sandra nous parlent de cette nouvelle approche et de ses impacts positifs sur les clients, les familles, les proches aidants et le personnel soignant. Pour plus d'information sur cette approche, vous pouvez communiquer directement avec Hélène et Sandra. Si vous êtes un proche aidant ou un organisme communautaire, veuillez contacter Hélène par courriel à : Helene.Carbonneau@uqtr.ca Si vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca Voir Saison 2 Episode 1 - Biographies et photos.docx

This is the second episode about the Building Capacity Project (Part 1 is episode #51), a joint initiative of UBC and Lakehead University. Alison Phinney and Granville Johnson focus on a Toolkit the project has developed to promote the inclusion of people with dementia in community programs. It is meant to help community leaders and program participants to understand how dementia is experienced and, thus, normalize how they can be included in mainstream opportunities.   Link to the toolkit: https://www.flippingstigma.com/ 

In this episode, Pat Shanahan speaks with Maggie Perquin.  Maggie retired early from teaching to become the carer for her wife Ruth who have been together for 27 years, married for 15 of those and between them they have 15 grandchildren.  Ruth, also a retired teacher, had been struggling with cognitive issues for about 8 years when she was finally diagnosed with vascular dementia in 2018.  Following the diagnosis, Ruth and Maggie connected with the Alzheimer Society Southwestern Partners.  While they were well received as a same-sex couple, they realized they were the only out participants in their group. Maggie approached the Alzheimer Society to consider starting a group to support 2SLGBTQ clients and caregivers.  The first two sessions of the group had carers of 16 Alzheimer clients.  Maggie has invited any listeners who might be interested in contacting her by email at l nanastable675@gmail.com Resources: Ruth and Maggie share their story in this video. https://on.alz.to/site/SPageNavigator/ASLM/2021/Cabin_Fever/ASLM_Cabin_Fever_2021.html;jsessionid=00000000.app20058b?NONCE_TOKEN=F25504F441FB0A8DA0A27C9905683678 Dementia as an Animal https://www.youtube.com/watch?v=ynAXxAO4pws Alzheimer Society Southwest  Partners https://alzswp.ca/ Ontario Alzheimer Society https://alzheimer.ca/on/en National Institute on Aging /Egale Canada https://2slgbtqi-aging.ca/tag/dementia/

In this final episode of our Young Onset Dementia series, guest host Jillian McConnell speaks with Dr. Mario Masellis, Associate scientist and Clinician-scientist with the Hurvitz Brain Sciences Research Program, Sunnybrook Research Institute & Sunnybrook Health Sciences Centre; Assistant professor, neurology, department of medicine, University of Toronto and Research scientist, Centre for Addiction and Mental Health. Jillian and Dr. Masellis discuss what genetic testing looks like for someone who has a close family relative that is living with Young Onset dementia, how testing for Young onset dementia is different from other diseases, who is a good candidate for genetic testing, and the implications of deciding to test or decide not to test for Young Onset dementia.  Resources:  Genetic Testing and Alzheimer's Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease Alzheimer's genes: Are you at risk? - https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-genes/art-20046552 A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics 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   

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. Alison Phinney speaks about her work as a nurse and, over the years working with dementia and how that has led her to create a new community-based program called Building Capacity Project. This is a project that is a partnership between Vancouver and Thunder Bay. The purpose is to discover the assets that the community has and develop that would support people with dementia in a better way. In episode 1, Granville and Alison speak about how they each got involved in community-based work and speak extensively about stigma and fear and how they are working to make a change. Granville talk in detail about one of two projects – Creating a t-shirt that has been distributed to change people's perspective of what living with dementia is about. 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 for her Mom, Chantal, who was a single mother. The story of how she bravely faced this experience during her formative years and how it influenced the now 21-year-old woman she has become is truly inspiring. Rachel candidly shares with Kathy why she had made the difficult decision to have genetic testing done to find out whether she has the same genetic mutation and will develop Young Onset Dementia as her Mother and her Mother before she did.   Resources Genetic Testing and Alzheimer's Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease  A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics  What Teens Need to Know if a Parent has Young Onset Dementia -https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/teens  Young Caregivers Association - https://youngcaregivers.ca/about/ Young Carers Project, Research Institute for Aging, University of Waterloo - https://the-ria.ca/resources/young-carers-project/  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 

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 cindy@youquest.ca 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.