Mary Beth lives in Southampton, Ontario and was diagnosed in 2012 with probable frontotemporal dementia at the age of 45. Since then she has become an advocate for people living with dementia both locally and internationally as a writer, blogger, and inspirational speaker. Mary Beth is a founding member and Chair of the Ontario Dementia Advisory Group (ODAG), an organization formed in 2012 with the mandate to influence policies and practices to ensure that people living with dementia are included in decisions that affect their lives.
Mary Beth's work crosses many initiatives including membership on the Ministerial Advisory Board on Dementia established by the Federal Minister of Health providing input into Canada's National Dementia Strategy. She is a founding member of the World Health Organization project: “Network of expert reviewers for the knowledge exchange platform of the Global Dementia Observatory.” Aside from her role as Co-Chair for Dementia Advocacy Canada, Mary Beth has also served as a witness on behalf of ODAG for the Canadian Standing Senate Committee on Social Affairs, Science and Technology for its study on dementia in the Canadian society.
Lisa is a care partner and advocate for people living with dementia from Calgary, Alberta. Her father John has Vascular Dementia. She is the founder and editor of Dementia Connections magazine, a publication and online resource created to reduce stigma, raise awareness, and provide resources to support people living with dementia, their families and care partners, and serve as a resource for health care providers. Lisa is on multiple boards including Dementia Network Calgary's Strategic Council, Gordie Howe C.A.R.E.S. & the Brenda Strafford Foundation Dementia Friendly Communities Initiative.
Keith Barrett resides in Ottawa Ontario and was diagnosed with Young Onset Dementia – probable Alzheimer’s in December 2016 and then in 2018. It took over two years navigating the health care sector to receive such diagnosis which included the recommendations to get his affairs in order! Keith was only 57 years of age. Keith worked 18 years in the heath care sector as a Medical Laboratory Technologist and Laboratory Manager and then in 1997 he entered the private social welfare sector where he continues to work today. Still working, driving and learning to live with Dementia, Keith’s focus is on helping to ensure various service providers and the Government involve people living with Dementia in their program and policy development and the delivery such. Keith’s also has a keen interest on how the Workplace can support people living with Dementia. Keith has participated in the 2019 Alzheimer Society Canada awareness campaign – I Live With Dementia – Let Me Help You understand and is a member of the Ontario Dementia Advisory Group.
Myrna lives in Maple Ridge, BC. After she was diagnosed in 2009 with Frontal Temporal Dementia, feeling total and absolute despair, her daughter Sherry explained to her, ‘It is what it is’. At that moment, Myrna decided to become educated in neuro-cognitive disorders, and to become an advocate.
Myrna’s advocacy is far reaching as she speaks on the topic with the Purple Angel Ambassadors, the Alzheimer’s Society of BC, various churches, and staff and residents of retirement and long term care homes. She recently also attended the Dementia Strategy Conference in Ottawa.
Speaking from personal experience from diagnosis, appointments, tests, appointments, and more tests, opened Myrna’s eyes on the vast issues within the current care systems. Her belief is that we can all do so much more for our complete community of neuro-cognitive disorders, and it drives her to ensure that the therapies, education, long and short term care practices by staff are all well versed and aligned in the care required, and that offer answers and paths to a fruitful life.
Faye was born and raised in Nova Scotia. She is the proud mother of three grown daughters. Faye lives in Windsor Junction and is an associate priest at St. Francis by the Lakes Anglican Church. She is active with the Alzheimer Society of Nova Scotia. She is on the Alzheimer Society of Canada Board of Directors and also their Research Committee, as well as serving on numerous other advisory and research committees, such as the NS Dementia Strategy, The Dementia Alliance of Canada, and in conjunction with several research universities. Faye has spoken to many groups both locally and nationally ( G7 Conference ). Faye considers herself an advocate for persons living with dementia. There is still more to life after dementia. She has a lot of living to do. As a person with Alzheimer’s, she does not consider herself disabled but differently-abled!
Ron was born, raised and lives in London, Ontario and was formally assessed with Minor Cognitive Impairment in August 2016. He has earned degrees from College Militaire Royale, University of Western Ontario, Wayne State University, and the University of Toronto. Nationally recognized for curriculum innovation in special education, Ron is a former teacher, consultant and school superintendent. A tireless advocate for people with exceptional needs, Ron has lectured in thirteen universities and colleges in Canada and the United States and speaks regularly on the topic of people living with dementia and their caregivers
Dawn lives in Southampton, Ontario, and since 2013 has been working directly with people living with dementia, care partners, multi-sector organizations and governments to help advance the rights of people living with dementia. Her consultancy work includes sharing her experiences as a care partner as it relates to quality of life, culinary experiences, development of programs and home designs and has experience with both young-onset and long-term care residents. Dawn is a Support Person for the Ministerial Advisory Board on Dementia for the Federal Minister of Health, is on the Project Advisory Team for SEIU Healthcare (PSW Workforce Development), is an Advisory Board Member of Dementia Action Alliance Canada, and an Advisory Committee Member for Baycrest. Dawn has also participated in and been a co-speaker at multiple conferences and has co-developed several Dementia Tool Kits.
I am a 66 year old person living with dementia. I suffered a massive stroke inn 2008 and was diagnosed with vascular dementia in 2009. Life was a struggle until in 2015, I found the Alzhiemer Society Toronto, and it was the beginning of my advocacy for those living with dementia. I have done interviews with major networks. I am also on a personal campaign to try and convince young people to quit smoking - I smoked for 52 years and when I quit in 2014, and I now have a mild case of COPD. In October of 2016, I joined a group for youth dementia awareness symposium headed up by Dr. Kristine Newman and her research team. It has been an amazing journey, has exposed me to many opportunities, and introduced me to so many people who are trying to find cures, and trying to make life more bearable. I never knew there was such a large number of people dedicating their lives in so many ways to help. I feel so lucky to be part of this group of very talented people.
Daniel lives in Calgary, Alberta and since 2015 has been the full time care partner for his wife Janet who was diagnosed with Early Onset Dementia in 2010. Prior to his taking on the role of full time care partner Daniel is a CPA and was a VP Finance in a beverage recycling organization in Alberta. Janet has recently moved into a residence and Daniel has started to focus his attention of advocacy for improving the services and lives for those living with Dementia.
A life-long resident of Ottawa, Matthew Dineen has been a local high school teacher since 1995. He is a proud husband and father to 3 children. After his wife Lisa was diagnosed with frontotemporal dementia at the age of 43 in January 2013 and subsequently placed in long-term care, Matthew became a “Dementia Champion” through his local Dementia Society. At that point, he became actively involved in helping bring about legislation calling for a much-needed National Dementia Strategy in Canada. His resolve to help shed light on the younger face of dementia has included numerous addresses, including the G7 Global Action against Dementia Legacy Event (Ottawa, 2014), the 9th International Conference on Frontotemporal Dementias (Vancouver, 2014), and the National Dementia Conference held in Ottawa (2018).
Together with his children, Matthew is proud to have spoken on the impact of dementia upon adolescents at the 2016 AFTD Education Conference held in Minneapolis, MN. He continues his advocacy work, remaining actively involved with both the Association for Frontotemporal Degeneration and the Dementia Society of Ottawa and Renfrew County. Matthew also serves as the Canadian liaison between Dementia Advocacy Canada and World FTD United, an international group of organizations and health professionals who provide support for care partners and all affected by frontotemporal dementia.
Frank lives in Toronto (North York), Ontario and since his official retirement from the Federal Ministry - Industry Canada in 2006, has been a care partner for his wife Irene, also retired from the Ontario Ministry of Community and Social Services. Diagnosed in early 2007 with Dementia/Alzheimer’s, Irene is now 12 plus years later, in the late stage with mobility and other health issues and aging concerns. The Alzheimer’s Society became Frank’s key learning institution through its many and varied seminars, conferences, support groups and reference materials.
For his devotion to ensuring that Irene received a quality, comprehensive home care program, Frank was awarded a distinctive certificate for family caregivers by CCAC (now LHIN) for superior care. He has been an active volunteer and advocate for the Alzheimer’s Society, especially with budget discussions with the Ministry Officials, Minister and Premier and also many MPPs throughout Ontario. Frank was a care partner participant at the National Dementia Conference - 2018 in Ottawa and a panelist at various conferences, speaking of his own care partner journey from Irene’s early to late stage with its peaks and valleys.
Frank continues to advocate for:
Bryan lives in Calgary, Alberta. He is retired and seeks out community options for his mother who continues to age with him and his partner Yvonne. His mother was formally diagnosed with Alzheimer’s in 2010. It is their collective wish for his mother to remain in a home setting.
Besides being a member of Dementia Advocacy Canada, Bryan is involved with the following dementia-related activities:
Bryan supports the development of Conversation Cafés to help address the isolation that some community residents experience. He actively advocates for non-facility based options to be utilized first. Bryan is a strong proponent of accessing community resources that enrich the lives of anyone who wants to age in place with dignity.
As a caregiver to his father who lived with Alzheimer's for 10+ years to age in place at home until January 2018, Ron utilized technology, community, creative strategies and access to research to support his family's life to live as best as possible. Ron has been invited to do presentations locally and internationally for Alzheimer's Societies, local communities, police, universities/colleges, researchers, innovators, and corporations. He coaches families, caregivers/partners, and individuals challenged with dementia.
Ron shares his knowledge on caregiving as we age, ways to use technology for caring, and living safely with dementia, especially for those at risk of wandering and going missing. He is an active member, advisor, and mentor to numerous organizations and educational institutions such as:
Further in his past, Ron has a background in Computer Sciences, Space and Communication Sciences, Marine Aquaculture, Life Coaching and Culinary Arts. He was the Founder and Executive Director of a Youth Career and Employment Centre that served over 30,000 young people, immigrants and career changers in the Toronto area during its operation.
Phyllis Fehr was given a working diagnosis of early-onset Alzheimer's, when she was 53 years. Phyllis promotes the abilities of people living with dementia by advocating for people living with this disease both locally, nationally and internationally. She has advocated for change for persons with dementia for 5 years as a past member of the Ontario Dementia Advisory board member with a focus on government policy. Phyllis was and still is on a number of boards and steering committees, including membership on the Advisory Group for the Ontario Dementia strategy and the Early Stage Working Group. She is an active board member for the Alzheimer’s board for HBHN; and Dementia Alliance International Alumni.
Phyllis is a popular guest speaker at a variety of events internationally from a lived experience perspective, educating about stigma of dementia and human rights for people living with dementia. She is still involved in many research projects.
Phyllis spoke at the Senate of Canada, Social Affairs, Science and Technology. Also on the Rights of Persons with Disabilities in the United Nations.
Leona is retired and lives in Waterloo, Ontario with her husband. They attend the Circle of Music and have recently joined the Planning Committee of Memory Boosters, a peer led social group which meets every other Tuesday throughout the entire year.
Leona's older sister is in the advanced stages of Alzheimers. Leona questions why we do not adopt a fuller curriculum for those with advanced stages of dementia and living in Community Care facilities? Such a curriculum should attend to more than the basic needs to sustain life, ie drugs, food, sleep, hygiene, safety, etc. A fuller curriculum would encompass enriching programs to address emotional, physical, psychological, social, and such vital needs etc. Staff and residents would benefit mutually, thus creating the domino effect. Leona sees "A FULLY ENRICHED CURRICULUM" as a win/win situation. At least we could offer our loved ones with dementia the opportunity to live fully throughout the entirety of their life, and the chance to succumb peacefully and happily when the end is inevitable.
I’m a dementia care consultant, trainer and speaker. I’m honored to support family caregivers who are caring for a loved one living with dementia. I was a care partner to my father who lived with vascular dementia for five years. Through my personal experience, I became a passionate advocate for improving dementia care for persons living with dementia and their families. I’m a Certified Positive Approach to Care Trainer and the owner of a dementia care company called Keji Consulting. I’m a volunteer with the Alzheimer Society of Nova Scotia and Co-Chair of the Dartmouth Community Health Board and studying for a Master of Arts in Family Studies and Gerontology. I’m thrilled to be a member of Dementia Advocacy Canada.
Christine Thelker is a current board member of DAI, and is from Vernon, British Columbia, Canada and at 59 says, her sense of humour has grown, since her diagnosis of dementia.Christine’s advocacy work as seen her speak at the ADI conference in 2019, at the COSP in New York at the the United Nations,, 2018, as well as at a side event at the Ford Centre in New York. Christine writes a regular blog called Chrissy’s Journey which is on Facebook, she has currently finished her first book. She previously worked for the Interior Health Authority for 13 years in various sites, including in dementia care and of life care. She advocates for families and patients and for better training for workers in dementia care. She also advocated for better working environments for the employees. Christine designed and taught a program to nursing students at the local colleges on end of life care and dementia care, and designed a program on unattended sorrow, which was in relation to all the deaths workers saw and the cumulative effects. She believes it has many similar effects on people diagnosed with dementia and doing more work around that. Widowed at 47 and then diagnosed with Vascular dementia at 56, Christine is still advocating, using her voice to help others. She loves working with Dementia Alliance International (DAI) and believes whole-heartedly that it helps keep her living well with her dementia. Her motto since being diagnosed is “I’m not done yet”. She says she is excited for Advocay Canada to be another avenue to do some great work to help change the perspective of society on Dementia and to create a better environment for people living with Dementia to thrive.
Susan Rae was born and lived in Calgary until she moved to Whitehorse in 2004. Her education in business administration lead to a career as administrator of the Calgary Blood Transfusion Service and various non-profit organizations. Twenty four years ago Susan and Andrew Kaegi got together as a couple and worked to establish a private medical clinic and Laboratory in Calgary. She currently uses her coaching, training and administration skills as a consultant to small entrepreneurs and non-profits. She has always had an interest in health and healing, support groups and seeking new information. Susan is trying to find a balance as a care partner to her husband Andrew, being active in dementia groups and continuing to work with her clients.
Dr. Andrew Kaegi and Susan Rae are married and had the opportunity to attend the National Dementia Strategy Conference last year.
Andrew Kaegi lives in Whitehorse Yukon and retired in 2011 as a physician specializing in Internal Medicine and Hematology. He studied medicine at the University of Otago, New Zealand and McMaster University in Hamilton Ontario. His career included research, working at the Blood Transfusion Service in Calgary and Toronto, hospitals and laboratories. He established his own medical clinic and laboratory in both Toronto and Calgary. In 2004 Andrew moved to Whitehorse to work as a full time specialist at the Whitehorse Hospital. Andrew was diagnosed with dementia in 2007 dementia. Since then his research has turned to minimizing the impact of dementia and improving his life style for brain health. With the support of his wife Susan Rae, he is learning to live a full life while living with dementia.
Dr. Andrew Kaegi and Susan Rae are married and had the opportunity to attend the National Dementia Strategy Conference last year.
Dana Lynn Livingstone is retired and lives on Vancouver Island. Dana worked as a Rehabilitation Assistant for twelve years in complex care and dementia care. She was also a Provincial Park Naturalist in various parks across Canada. Dana has had a life long love for rescuing dogs that she shared with her mother.
Dana began advocating for MAID after her beloved mother who had dementia was denied her wish for a peaceful, medically assisted death.
MP Randall Garrison sponsored House of Commons e-petition 1854, whereby Dana asked parliament to amend to bill C-14 by adding advance requests for those diagnosed with dementia. The e-petition was tabled in parliament in April 2019. The Minister of Justice put it on the back burner.
Dana hopes for the development of dementia villages, more funding, better staffing and better services for caregivers. She advocates for those who wish to choose a peaceful, medical assisted death.
Dana volunteers with a wildlife advocacy group and enjoys Qi Gong and hiking.
· Jule Briese a retired educator has a General Arts Degree in Psychology and English from the University of Western Ontario. She earned her certificate in Conflict Resolution and Negotiation from the Justice Institute of B.C. Jule also completed her Death & Grief Studies Certification under the supervision of Dr. Alan D. Wolfelt at the Center for Loss and Life Transition in Fort Collins, Colorado.
· Jule lives in Qualicum Beach, British Columbia with her husband and their cat Ms. Mew. She strongly believes in the right to choose MAID when an individual’s quality of life is being severely compromised. She supports this choice made by her husband to access MAID before his window of giving informed consent narrows as a result of Alzheimer’s’.
· Jule is the author of Dancing Into Reunion- An Adoption Memoir in Haibun format, Reflections ‘An Inward Journey’ and most recently The Hot Chocolate And Decadent Cake Society – Alzheimer’s And A Choice For MAiD – A memoir in poetry and prose.
· She also is a volunteer facilitator for Elder College affiliated with Vancouver Island University in Nanaimo. The courses Jule facilitates are Nurturing Our Inner Garden, Nurturing Grief and Mourning. Her newest course is Alzheimer’s And A Choice For MAiD
· Nature is Jule’s muse inspiring creativity whether hiking in the mountains, walking along beaches, nordic skiing or kayaking.
· Jule is no stranger to open stage performances. Recently she has begun to take her performance ‘Inspired by Nature – Seasoned by Life’ an evening of poetry, songs and stories to audiences with proceeds directed to DWDC This creates the perfect venue to advocate for spiritual and emotional nurturing for those diagnosed with Alzheimer’s’ who have chosen to access MAID before their window of giving informed consent narrows. It also offers a platform to advocate for spiritual and emotional nurturing for their care partners. The opportunity to advocate for an amendment to Bill C-14 which would legalize Advance Requests for MAID for those diagnosed with Alzheimer’s who have made their choice known is also given attention in her performance. She hopes her performances will stimulate reflection and encourage conversation.
· Jule finds spiritual direction in the wisdom from the mystic Meister Eckhart’s counsel “Where shall we begin? Begin with the Heart. For the spring of life arises from the Heart and from there runs in a circular manner.”
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