My journey in the field of aging and healthcare has been profoundly shaped by my grandmothers and my father, whose lives and experiences have been my greatest inspirations. Their influence led me to a 20-year career dedicated to improving the care and support we offer to older adults, particularly those living with dementia. I am so passionate about this field that I even have a t-shirt that I proudly wear that says “unapologetically passionate”.
Changing the Narrative and Transforming Practices
For much of my career, I’ve been focused on shifting the narrative surrounding dementia and transforming practices. Much of my work involves engaging and collaborating with individuals living with dementia to ensure their voices and experiences are at the center of efforts to improve their quality of life.
Over the years, I’ve had the privilege to work with a number of forward- thinking organizations and been invited to speak at various conferences and round tables in Canada and internationally that have given me a platform to raise awareness about the lived experiences of people with dementia, share better practices, and advocate for more engagement and inclusion of people living with dementia
A significant moment in my career was being one of a select few to be invited to speak at Canada’s first “National Dementia Conference: Inspiring and Informing a National Dementia Strategy for Canada.” This opportunity allowed me to contribute to the larger conversation on dementia care and advocate for policies and practices that prioritize the needs and voices of those living with dementia. In 2022, I was recognized for my efforts to change the culture of aging in Canada by receiving a Walk with Me Trailblazer award.
The Power of Collaboration
Any movement forward has never been done alone. I am fortunate to have worked with and alongside many wonderful people who inspired, supported, and mentored me (including Dr. Al Power shown in picture). Some of my best teachers, allies, collaborators, and friends have been people living with dementia, including my long-time collaborator and dear friend Mary Beth Wighton, (shown in picture with Al Power), a respected dementia advocate and author.
Since our meeting in 2012, Mary Beth and I (with the support of other colleagues and allies) have been able to accomplish a lot including:
Advocate for people living with dementia to be keynote and featured speakers at conferences and events
Develop an educational documentary video series to challenge stereotypes and stigmas associated with dementia
Shape the environmental design and furnishing of senior living communities
Develop and deliver education informed by the perspectives of people living with dementia
Provide user feedback on innovative products and services
Influence senior living and long-term care practices
Provide input into the development of resources and tools to help health care professionals
Shape sector standards, organizational policies, and national policies
Our collaborative approach has largely been inspired by the authentic partnership approach of the Murray Alzheimer Research and Education Program in Ontario, Canada. However, over the years we have come to learn that there are some specific actions and mindsets that we believe are needed to ensure successful engagement and inclusion of people living with dementia in any organizational change efforts. As such, we have compiled some tips that may be helpful for health care professionals and organizations wishing to engage and include people living with dementia to inform the work that they are doing. They include:
Organizational and Operational Considerations
Share an organizational commitment to participatory decision-making and strengths-based serving leadership
Have a strategic plan that articulates commitment to inclusion of people living with dementia
Demonstrate a foundational belief in and practice of fostering authentic relationships
Have a variety of opportunities for inclusion, engagement, and collaboration (e.g., advisory or steering groups, hiring and service/product development committees, etc.)
Include people living with dementia at various points along their journey with the condition
Ensure adequate funding and leadership support for ongoing collaboration
Provide education and training to all community members to build awareness about dementia and creating a culture of inclusion
Creating a Safe Space for Engagement
Ensure a welcoming, calming, and supportive environment
Get to know each individual and identify their specific needs, wants and concerns for inclusion and collaboration
Provide proper supports to foster engagement (e.g., adequate breaks, meeting materials, trusted care partners, accessible washrooms, refreshments, quiet room to help people decompress and recalibrate from sensory overload, etc.)
Assign a key point person for regular check-ins to ensure comfort
Establish a mentorship program to provide mutual support
Have clearly assigned roles, routines, and group ethics
Be adaptable and flexible to changing levels of engagement (including recognizing that quietness does not mean disengagement)
Establishing and Maintaining Good Communication
Use empowering and respectful language that is NOT childlike or deficit based
Ensure communication is clear, jargon-free and accessible (e.g., verbal and written)
Prioritize cultural humility and sensitivity; be open to asking questions to learn (and unlearn)
Make the environment accessible to support engagement (e.g., good seating and lighting, minimal noise/distractions, available quiet space, accessible location and washrooms, good signage, etc.)
Explore and accommodate individual communication preferences; don’t forget facial and body language are also forms of communication not just words
Always speak directly to the person with dementia
Allow time for formulation and response; don’t speak on their behalf unless they ask you to assist them
Use visual prompts and name tags to enhance understanding and connection
Avoid starting conversations with "do you remember"; instead, provide recaps
Ensuring Ethical Practice
Ensure ongoing informed consent and check consent on a regular basis
Respect the right of the person to change their involvement levels
Ensure any data that is collected is secure and that people receive updates on how the information is being used (e.g., research data)
Acknowledge contributions in printed materials and presentations
Maintain accountability to address any unacceptable practices
Continuously reflect on the effectiveness and purpose of collaboration (whom is it serving – you or your target audience?)
I am sure many of my colleagues can relate when I say some of my most profound learnings (and even unlearnings) in my career thus far, have emerged from actively being with, listening to, and engaging people living with dementia. The challenge for us as health care professionals is to continuously ask ourselves – are we listening to the voices of those with dementia and their care partners to enhance our understanding and ensuring the work that we are engaged in best serves and supports them? What do they really want and need to live well? And, how can we help to amplify their voices so that they are at the table and involved in decisions that best help them to not only survive but thrive?
I believe that engaging individuals with dementia as active partners is not just beneficial but essential for creating a compassionate and inclusive community. I hope the above tips from Mary Beth and me have inspired you to include and collaborate with people living with dementia, if you have not already. Together we can achieve so much more!
Let’s Connect and Collaborate
Although there are many more tips that could have been included, if you would like to connect or learn more about the work that I am engaged in, please contact me at jlkconsultingandcoaching@gmail.com or find me on LinkedIn. I look forward to collaborating!
