The Canadian Dementia Learning and Resource Network (CDLRN) is a knowledge hub that facilitates collaboration between community-based projects across Canada and amplifies their successes.
Led by the Schlegel-UW Research Institute for Aging (RIA), CDLRN and the community-based projects are funded by the Public Health Agency of Canada. These projects focus on the development of innovative tools, resources and approaches that enhance the wellbeing of people living with dementia and care partners by increasing awareness, support, knowledge and understanding of dementia. These innovations are shared broadly to support dementia policy and practice across Canada.
CDLRN is supported by a staff and research team at the Schlegel-UW Research Institute for Aging (RIA) and is guided by a Community Advisory Committee.
A Community Advisory Committee was established in winter 2021 to inform and advise on the development and work of the CDLRN. The committee is composed of members from project teams and the broader dementia community including those with lived experience. Our committee includes individuals from across Canada, including people living with dementia, care partners, Indigenous people, and others with significant expertise in dementia, research, knowledge mobilization, quality improvement, and evaluation.
People living with dementia and care partners take a central role in the advisory committee, sharing their experience and expertise to guide the formation of the CDLRN and community of practice.
Nouha Ben Gaied – Biography coming soon.
Bill Heibein – Bill lives outside Thunder Bay, Ontario where he continues to live well with a diagnosis of dementia. In January of 2000, he was diagnosed with “Early Onset Alzheimer’s” and told that based upon averages and with an early diagnosis and medication, he might expect up to five more good years; but to still get all of his affairs in order. After a 38 year career in public accounting, he was eligible for and immediately took early retirement from Ernst & Young and retreated to his farm. He and his wife Heather owned and operated “Amethyst Farms”; an 150 acre farming operation under which name they had bred, trained and shown registered Quarter Horses and which he continues to operate to this day. Bill contacted the Alzheimer Society of Thunder Bay in order to learn more about his diagnosis. This ultimately led to becoming involved with various research projects in conjunction with Lakehead University and the University of Waterloo. In addition to his role with the CDLRN CAC, he also is a member of the advisory committee for the Alzheimer Society of Canada, The Northwest Dementia Working Group and a past founding member of the Ontario Dementia Advisory Group. He was one of the first four people with a diagnosis of dementia ever to appear in person before the Canadian Senate Review Committee who (at that time) were studying the status of Dementia in Canada prior to issuing their report.
I am currently employed in my home community as Director of Health Services since 2006. I have worked in various First Nation Organizations mainly in the field of health. I am so passionate on the health and well-being of our Indigenous people and consider myself as a strong advocate for our region. I enjoy bringing on new challenges, building on or enhancing partnerships in order to help facilitate change; whether it is improving access to services or assisting people throughout their health journey.One of my many accomplishments is becoming a Certified Health Manager as well as Project Management, leading our Health Organization through the Accreditation Process and receiving accreditation status, completing the Community Wellness Program. My goal is to ensure that First Nation patients right for safe and adequate health care needs are met for members of Pinaymootang. I became involved in the Dementia project through my work with the University of Manitoba, in order to bring more continued education and awareness relating to dementia due to the higher risk rates.
My interest in food extends to my daily home life where my family is very interested in gardening and making our own food from locally and sustainably sourced ingredients. We have many fruit trees, berry bushes, and do container gardening on our small lot. A new jelly I made this year was Fireweed Jelly from wildflowers near my parent’s house outside of Thunder Bay.
Katherine Thompson-Nelson – Katherine is a journalist who has worked in print, radio and television. Over the course of her career, she has covered everything from cutting-edge science and medicine to entertainment and sports.
She has lived experience with dementia: While Katherine was still an undergraduate university student, her mother Kay had a hemorrhagic stroke which resulted in cognitive deficits and, ultimately, progressive dementia due to age combined with brain injury. Katherine initially lived with her mother and then managed her care, providing care for nearly 20 years, until Kay’s death.
In addition, she supported her husband’s family in providing dementia care for her father-in-law Charlie until his death in January 2021, and continues to support them in providing dementia care for her mother-in-law Joyce.
Passionate about supporting change and creativity in dementia care and caregiving, she lends her time and knowledge to several organizations including the Family Caregivers of BC, Dr. Matthias Hoben (York U): Research Advisory Committee on Quality of Life & Care, UBC Patient & Community Partnership for Education, Centre for Health Evaluation and Outcome Sciences, Family Caregivers of BC, BC Office of the Seniors Advocate Providence Health Care: Coordinating Care, Shared Care & Virtual Health, Family Caregivers of BC, BC Law Institute & Canadian Centre for Elder Law, BC Centre for Palliative Care and the West End Seniors Network.
Katrina continues to feed her creativity with new challenges; she lives in Vancouver, where she works in TV commercial production.
Kitty and her partner have a daughter and two tabby cats.
Maureen has been involved in community initiatives for the past 30 years, often as a catalyst to new works, both on the international and local level. Maureen is a Life Skills Coach and teaches in many reserves. In her free time, she enjoys being with her family of 2 sons and a daughter, and 3 granddaughters and a grandson.
Miranda Potts – Raised by an activist, social worker, single mother, Miranda grew up on picket lines and has been involved with community work and social activism for nearly her entire life. She was raised and currently resides in the NDG (Notre-Dame-de-Grâce) community of Montreal where she continues to advocate for marginalized people while promoting inclusion and diversity through her work.
Miranda was hired by Prevention CDN-NDG as their first outreach worker for the 55+ community in the NDG area, with the mandate to reduce isolation and elder abuse. Her work at Prevention includes home visits, one-on-one interventions, accompaniment and advocacy. She also implemented and runs psychosocial programs such as the Older & Wiser monthly lecture series, and Where the Heart Is, a creative circle where seniors knit and create for those in need. Miranda co-founded WIN-The West-end Intergenerational Network (with Tracie Swim of Extra Miles), which aims to bridge the gap between youth and seniors and aims to create a more inclusive community, and now has upwards of 25 members. Along with her position at Prevention CDNNDG, she also currently serves as WIN’s Co-Coordinator and as the Community Health Advocate/Intervention Worker at the NDG Senior Citizens Council. Additionally, Miranda works in advocacy and caregiving for BethCare Services for the Elderly while also accepting private clients for psychosocial interventions and assistance with activities of daily living.
Miranda’s enthusiastic leadership in her community has been recognized through appointments to boards and committees of organizations, such as the Montreal Council of Women, (CIUSSS) Cavendish User’s Committee; Gay & Grey, NDG Health Working Group, Bienvenue NDG, Black Mental Health Connections. Most recently, she was recruited to the Canadian Dementia Learning and Resource Network Community Advisory Committee, which is an initiative funded under the Public Health Agency of Canada’s Dementia Community Investment (DCI).
On a personal note, Miranda loves to travel in order to learn about and gain experience within diverse cultures. She has a daughter who is currently studying at Pace University in New York City.
Myrna Norman – My name is Myrna Norman. Coming from Maple Ridge BC, a suburb of Vancouver, my life has taken a significant turn after being diagnosed with Frontal Temporal Dementia in 2009. Currently my diagnosis is MCD after being diagnosed with Lewy body and my drivers license removed by the doc, and Alzheimer’s, confusion reigned.
Could I be the only one with all of the difficulties in diagnosing? Could my passion for advocacy have spurred the neutrons in my brain to make better connections? Part of my advocacy is a peer group for those with memory issues in my hometown. Fun events like ‘Christmas in July’, experiences with art, quizzes, etc. are part of our get togethers.
Sone of the groups that offer highlights to my life are Early Persons Living with Dementia group, it’s stimulating and energetic and enriching. The Dementia Sisterhood, the Action Committee, CCNA, Alzheimer’s Advisory, Dementia Advocacy Canada, Community Response Network, Dementia Friendly Task Force, Elder Law, Advance Care Planning and even more. Much to do and much to learn and to share, isn’t that what life is all about? Won’t you join me?
Odette Gould – I am a bilingual Acadian, living in New Brunswick after many years in British Columbia and the USA. I have recently retired as a university professor of gerontology and psychology and continue to work as a researcher in these areas. My husband and I have been caregivers for all four of our parents as each developed dementia over the last 20 years. I have given multiple community talks on dementia caregiving and dementia-friendly communities and am the co-founder and co-facilitator of a dementia caregiver support group in my community. I have a PhD in Lifespan Development and Aging from the University of Victoria.
Rose Ong – Rose Ong is an advocate for People living with Dementia (PLWD). She is a wife to Patrick, the mother of two grown sons and a sweet granddaughter, 7 year old Arianna. Rose writes stories and poems for Dementia Alliance International (DAI) and Dementia Connections. She is honoured to participate as an adviser to the Canadian Dementia Learning and Resource Network
(CDLRN) and numerous research projects across Canada. She has had Vascular Dementia for 15 years.