Meaningful engagement of people with lived experience of dementia
The lived experience framework guide outlines the Alzheimer Society of B.C.’s commitment to the meaningful engagement of people living with dementia and caregivers.
“It is really important for me as a citizen to give back. I had so many people give to me throughout my life…I really needed to become involved and I really needed to advocate for other people.”
-Myrna, person living with dementia and dementia advocate
Download the Lived experience framework guide (PDF)
The Alzheimer Society of B.C. is committed to ensuring that the voices of people living with dementia and caregivers inform all aspects of our work, helping us to better assess community needs and develop both policy and strategy, as well as supporting dementia research. The lived experience framework guide underlines our commitment to the meaningful engagement of people with lived experience of dementia, a commitment that is deeply embedded in our strategic plan.
Meaningful engagement opportunities invite people directly affected by dementia to actively contribute and shape the work of the Alzheimer Society of B.C. It is critical that people living with dementia and caregivers have opportunities to purposefully participate in a way that recognizes their unique perspectives, experiences and abilities.
To learn about the Alzheimer Society of B.C.’s meaningful engagement opportunities, click here
*This framework guide was co-created by individuals with lived experience of dementia.
What is lived experience?
Having lived experience means a person has been directly affected by dementia. People living with dementia and those supporting them have experienced firsthand the cognitive and emotional changes, as well as the impact dementia has on daily life, relationships and overall well-being. Each person brings a unique perspective and understanding of the dementia journey that can help shape dementia-related initiatives, policies and support services.
Why it’s important to engage with people with lived experience
- People living with dementia have rights - they are entitled to be included in all that we do.
- To embody the idea of "nothing about us without us".
- To hear a perspective that otherwise wouldn't be understood.
- To reduce discrimination and stigma.
- To ensure our programs, services and initiatives are informed by a range of experiences and responsive to people's changing needs.
- To make sure that what matters to people living with dementia, their families and friends is addressed.
- To offer opportunities for skills and empowerment to people affected by dementia.
Guiding principles for lived experience engagement
- Creating an environment of inclusivity and flexibility, where people affected by dementia feel welcomed, respected and valued.
- Including diverse voices that are representative of demography and geography.
- Fostering a culture of empowerment and engagement that emphasizes the voices of people who are experts by experience.
- Engaging with transparency and integrity, with a clear sense of why we are engaging.
- Offering options that fit with people's abilities, availability and interest.
Committee for meaningful engagement of people with lived experience
In the summer of 2021, the Alzheimer Society of B.C. established the committee for meaningful engagement of people with lived experience. This committee is made up of an interdepartmental group of staff and people with lived experience of dementia. The committee’s purpose is to ensure voices of lived experience – by which we mean both people living with dementia and caregivers – inform all aspects of the Society’s work. The Alzheimer Society of B.C. is committed to providing meaningful engagement opportunities that go beyond consulting, to collaborating and co-creating. The committee conducted focus groups to engage with several caregivers and people living with dementia during the development of Meaningful engagement of people with lived experience of dementia to ensure what matters most to people with lived experience was represented. The committee will continue to work to ensure that the voices of lived experience are at the forefront of everything that we do.
Meet two of our committee members: Dr. Jim Mann and Geri Hinton
“Volunteering with the Society has helped me learn more about my disease, which has helped me gain and retain confidence as I experience new and different outcomes from my dementia. My contributions have also allowed me to use my own skills and acquire new ones as the Society’s reach in our province expands. I think volunteering is a win-win.” – Jim Mann, person living with dementia.
“As a volunteer and a caregiver with lived experience, I strive to offer support and hope to others. My commitment to volunteering comes from my belief that volunteers can build compassion and community through participating and contributing to the work of an organization.” - Geri Hinton, care partner.
Learn more about Jim and Geri and the important role they play as committee members here.
Additional resources:
- Meaningful engagement of people living with dementia: A resource guide
- The Canadian Charter of Rights for People with Dementia
- Flipping Dementia Stigma: An Action Group's Guide
Contact us
For general inquiries about the Alzheimer Society of B.C.’s lived experience initiative, contact: livedexperience@alzheimerbc.org