Dementia Dialogue

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 -  [email protected]

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.

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

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 [email protected]

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