Advisory Committees of People with Lived Experience

We support all Nova Scotians on the dementia journey. “Nothing about us without us”, a powerful idea embraced by dementia related organizations worldwide, guides our work at the Alzheimer Society of Nova Scotia. Our commitment to this philosophy includes amplifying your voices on issues that matter to you. To do so, we have established two new advisory committees comprised of people living with dementia and care partners.

The Advisory Committees of People with Lived Experience will ensure that the voices of those experiencing dementia are included in all aspects of the Society, from strategic direction to program planning. Advisory committee members will provide expertise by sharing insights based on lived experience to support the strategic vision and mission of the Society. Objectives of the committee are to:

• Identify and review advocacy resources. 
• Help guide ASNS campaigns to reduce stigma of people with dementia in Nova Scotia.
• Provide input on research related initiatives.
• Help ensure that organizational wide communications materials have relevant messages.

Committee Members

Care Partner Committee

Anne Belliveau is a retired research coordinator and educator. She was a care partner for her mother throughout her journey with dementia. As a result, she enrolled in several courses to learn more about dementia and became an advocate for dementia friendly communities. She currently facilitates two Caregiver Support Groups and has started a Memory Café in her community. She is also a member of the Canadian Dementia Learning and Resource Network Advisory Committee. She has participated in research groups and a hospital committee aimed at improving acute care for people living with dementia. When not advocating for people with dementia Anne is an active wood carver who has won awards at both NS and NB carving shows.  

Kailey Durette is originally from the beautiful Annapolis Valley and currently lives in Hammonds Plains with her husband and two children. Her family has always advocated passionately for supporting dignity and quality of life for people living with dementia and she has proudly continued that tradition as a Registered Nurse. She has experience working in Critical Care, Nursing Education and Long-Term Care and recently became the provincial Professional Practice Leader for Elder and Frailty Care with Nova Scotia Health. Her mother was diagnosed with young-onset Alzheimer’s disease 10 years ago at the age of 51. As a family member heavily involved in supporting a person living with dementia, Kailey has experienced the challenges of navigating complex care systems. She has appreciated the support of the Society through programs such as the Caregiver Education Series, First Link and the annual Dementia Care Conference. She is honoured to have the opportunity to bring personal and professional insights to the Advisory Committee of Lived Experience and hope sharing her family’s journey will help advance the work of this valuable organization. 

John Reid lives in Halifax. He is a retired historian from Saint Mary’s University and the spouse of a person who has lived for many years with frontotemporal dementia.  As well as being part of the Alzheimer Society of Nova Scotia’s Advisory Committee of Lived Experience, he also volunteers with NWBC, the broadcasting station at Northwood Halifax. He enjoys daily walks around Halifax, and sometimes longer distances, and continues to be active in researching and writing sport history. 

Shawna O'Hearn’s personal connection to Alzheimer’s has been life changing; her mother lives with the condition, and she has been the primary care partner, supported by her siblings. This experience has been both challenging and transformative, deepening her understanding of the complexities of caregiving and the vital role of community support. The guidance and resources provided by the Alzheimer Society of Nova Scotia have been invaluable in this journey, reinforcing her commitment to advocacy and education. Shawna is an Occupational Therapist with a PhD in health geography, specializing in how our environments influence health outcomes. She is the Director of Serving and Engaging Society in the Faculty of Medicine at Dalhousie University. Shawna’s research and advocacy emphasizes aging, women’s health, community engagement, and diversity. She is passionate about creating equitable and accessible environments for all individuals and communities. Through her volunteer work, she aims to empower others affected by Alzheimer’s and promote inclusivity and understanding within the community. 

Dave Spencer lives in Dartmouth, Nova Scotia, and is originally from Rencontre West, Newfoundland. After his retirement, he began to volunteer with people in long-term care facilities and that, coupled with his own mother’s condition many years before, were his first experiences with dementia. It was shortly after his wife’s diagnosis of vascular dementia that he recognized his need for support and joined a Caregiver Support Group. Doing so offered him a place to share his feelings and offered hope and solace during what continues to be a challenging time. He especially enjoys taking walks with his wife, spending time with family, and taking pictures. He knows what a difference the Society made in his life, and it is his honour to be a support for others. 

Carolyn E. Fowler is a fourth generation African Nova Scotian, Carolyn lived and worked mainly, in Halifax and Dartmouth, NS. She earned progressively responsible employment opportunities, a MEd. from Mount Saint Vincent University, learned French as a Federal Government employee in Ottawa and owned a small business. During her career, she focused on adult education initiatives designed to ensure the dignity of, and respect for, the clients she served. As well, Carolyn served on several Community Boards recognizing that we achieved more together than we did working alone. Last year she served as Juror for the Dartmouth Book Awards. Finally, since retirement, Carolyn works to document Oral History Stories. As a Project Coordinator, in collaboration with three community organizations, they published a book and video to feature, Black Women Who Made a Difference in Nova Scotia: Sharing Wisdom Stories Inspired by Life Lessons (2023). 

Elfrida Adiele is a Contining Care Assistant in a long-term care/ nursing home facility, which has enabled her to understand the intricate and transient nature of the human body. It is a privilege for her to be of help in the things that matter to her friends and seeing them smile. Resolving a delicate issue that concerns them helps her sleep well. Her mission as a CCA is dignity, integrity, preference, independence and accountability. Thus, Elfrida shares that it is humbling to be on the Advisory Committee of Lived Experience. It has given her the opportunity to appreciate the people that have been exemplary regarding the awareness of Alzheimer’s in the community. She is happy to say that her friends taught her how to play ‘BINGO’ and this is her current obsession. 

Wayne Stewart attained an undergraduate degree from St. Mary’s University and following that, had a 30-year career with the Nova Scotia department of Justice. He currently operates as a litigation guardian in adult protection cases before the courts and Nova Scotia. Wayne has had significant contact with individuals who have been affected by dementia, in both his personal and professional life. He is an advocate for everyone on the dementia journey and has significant compassion for them. Wayne is a husband, father and proud papa. He enjoys the outdoors, any sporting activity, and exploring different types of foods.

Denise MacDonald-Billard is a life-long HRM resident. She, her husband and daughter moved to Bedford 22 years ago. This year her family welcomed their precious grandson, Benjamin. Denise has an undergraduate degree from SMU and a Master’s degree from Dalhousie.  Always interested in taking on new challenges, Denise completed her Project Management Certification in 2017. Professionally Denise is a Registered Social Worker who has worked with the provincial government most of her career.  Her current role is Senior Director of Strategic Operations. Denise focuses on developing and maintaining relationships with a diverse network of service providers who support Nova Scotia’s most vulnerable citizens. Denise has personal connections with dementia within her family. Her mother and mother-in-law, with the support of their loved ones, are currently facing the challenges associated with this condition. Outside of work Denise enjoys CrossFit, running and golfing with her best friends. 

Wendy Burns Morrison, born in Ottawa Ontario, travelled, studied and practiced graphics/fine art eventually settling in Cape Breton Island which is now her home. She became the primary Caregiver to her husband for 15 years who lived with Lewy Body Dementia with Parkinsonisms and sadly died in January of 2023. Now, Wendy looks forward to dedicating her knowledge and extensive experience in efforts to make a real difference in the lives of Caregivers with loved ones on the dementia journey. The opportunity to share awareness and illuminate areas that might benefit is profound! Working with amazing co-committee members and the Society is a golden opportunity toward opening doors and bridging gaps - all with the promise of making a very real difference! Her goal is to provide support to Care Partners and Clinicians. One step at a time! Advocating for families and those living with dementia is just a start!

Marie Kennedy lives in Lochaber, Nova Scotia with her husband Allan and their 2 dogs. They have two sons - Alex and Ben. Marie has been an educator for 31 years - in the role as a high school English teacher and for the past 14 years as a school counsellor. She is also completing her training to become a Registered Counselling therapist. Her mom lived with Alzheimer's for 10 years and it has profoundly changed life for Marie and her family and her siblings. Marie and her sons wrote a children's book called "It's Going to be OK - Our Family's Journey with Alzheimer's" in the hopes it would help children understand their loved ones who are living with the illness.

Rosemarie Clayfield has lived in NS, her entire life. She retired to Truro to be closer to her four children and 9 grandchildren who all live within an hour's drive. She facilitates the Caregiver Support Group in Truro. She has both personal and professional experience in caring for persons living with dementia. Her father and both in-laws had dementia. She also worked as an RN in long term care throughout her entire career. She has always tried to ensure that persons living with dementia were treated fairly and with respect and dignity. She has been associated with the Society since the early 1990s in the launching of the Alzheimer's and Related Dementias Care Course. Many years later she became a Behaviour Resource Consultant and worked with staff at different LTC facilities to develop care plans to better understand behaviours and achieve better outcomes. She also did educational presentations for the public and hospital staff. These experiences showed her that people are eager to learn how to do better in supporting persons living with dementia. Volunteering for ASNS has always been part of her retirement plan and allows her to continue doing something that she cares about.

Interested in learning more about the committees and how you can get involved as a volunteer? Contact Rosanne Burke, Manager of Advocacy at rosanne.burke@asns.ca.