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Proudly Hosting The Dementia Collective Podcast!

What if good dementia care was not about getting everything right, but about understanding the person in front of you? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Dr. Natali Edmonds⁠, board certified geropsychologist and founder of ⁠Dementia Careblazers⁠, to explore what caregivers are rarely told about dementia care, and why striving for perfection often makes the journey harder, not better. Natali shares her path into geropsychology, from a formative moment during her clinical training that exposed how poorly systems serve older adults, to her work inside hospital and home based care settings. She reflects on why short appointments and blanket rules fail families, and how individualized, compassionate care makes a meaningful difference. Together, Andrew and Natali unpack the emotional weight caregivers carry, why self blame is so common, and how well intentioned strategies can sometimes increase stress for both caregivers and their loved ones. They also discuss early onset dementia, gaps in existing supports, the role of multidisciplinary care, and why listening to a person’s response matters more than following rigid guidance. In this episode: • Why good dementia care is not about perfection • What caregivers often overthink, and what they miss instead • How to evaluate advice and credentials in a crowded online space • Why explaining “you have dementia” can backfire • When safety strategies help, and when they hide unmet needs • The unique challenges of early onset dementia and younger caregivers • How self compassion changes the caregiving experience • What caregivers are doing better than they realize Whether you are caring for a loved one with dementia, navigating burnout and self doubt, or working professionally in aging and memory care, this conversation is a grounded reminder that doing your best does not mean doing everything right. Good dementia care is personal, human, and shaped by the person you are caring for. Learn more at:⁠⁠ ⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠ ⁠⁠⁠https://careblazers.com⁠ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:10:20
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Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds)

What happens when families sense cognitive change years before dementia is ever named, and are left living in uncertainty while waiting for clarity that arrives too late? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Greg McGillis⁠, engineer, entrepreneur, and founder of ⁠Brain Care Technologies⁠, to explore why dementia is so often detected only after lives have already been disrupted, and what might change if cognitive decline were noticed earlier. Greg shares the long arc of his career, beginning in the early 1990s working in assistive technology with people whose physical disabilities limited their independence. That early work shaped his understanding of dignity and agency, lessons that stayed with him through decades in engineering leadership before he made a deliberate return to biomedical engineering later in life. The conversation becomes deeply personal as Greg reflects on supporting his father in law, who is now living with Lewy body dementia in long term care. He speaks candidly about watching subtle changes accumulate, the years of uncertainty before answers arrived, and how families are often left wishing they had known sooner, not for a cure, but for time, planning, and fewer surprises. Andrew and Greg explore why the gap between early brain changes and clinical diagnosis remains so wide, and what families lose during that waiting period. They discuss how current systems often rely on crisis rather than curiosity, and why caregivers are frequently the first to notice cognitive change long before healthcare systems are prepared to respond. The episode also examines Greg’s work at Brain Care Technologies and his belief that understanding brain function earlier, through non invasive approaches, can support better conversations and planning. Rather than positioning technology as a solution on its own, Greg emphasizes its role in helping families move from confusion to clarity, while respecting uncertainty and avoiding false promises. Throughout the conversation, Greg challenges the idea that early awareness should be feared. He speaks to the importance of hope grounded in realism, and why earlier understanding, even without definitive answers, can empower families rather than overwhelm them. In this episode: • Why dementia is often detected years after cognitive changes begin • What families lose during the long wait for answers • Why caregivers are usually the first to notice change • The emotional toll of uncertainty before diagnosis • What early awareness can and cannot change today • How earlier understanding can support planning and dignity • Why proactive dementia care must be handled with honesty and care Whether you are a caregiver, a family member, or someone trying to understand dementia beyond clinical timelines and stereotypes, this conversation offers clarity, perspective, and a grounded look at why knowing sooner can change how dementia care is experienced. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠https://www.bluebellvillage.ca⁠ ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://braincaretech.ca⁠ ——— Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 56:47
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wOEE0NEE4QTk1RTc0MUJB

Knowing Sooner Changes Everything in Dementia Care (with Greg McGillis)

Join The Village and help shape conversations like this by submitting questions to our guests: https://www.patreon.com/cw/blueBellVillage ——— What happens when a diagnosis doesn’t just change a life, but quietly changes the way a room responds to you? In this episode, ⁠Andrew Karesa⁠ sits down with ⁠Phyllis Fehr⁠, an international dementia advocate, registered nurse, author, and ⁠human rights leader⁠ who has been living with a diagnosis of early-onset Alzheimer’s since the age of 53. Phyllis’s relationship with dementia began long before her own diagnosis, shaped by early caregiving experiences in her family and later by a career in critical care nursing. Those layers of lived experience inform everything she shares in this conversation. Phyllis reflects on what it was like to notice changes in herself, to seek answers as a healthcare professional, and to eventually receive a diagnosis that altered not only how systems saw her, but how people spoke to her, looked at her, and included her. She describes moments where conversations shifted mid-sentence, where attention moved away from her, and where assumptions about capacity replaced curiosity about who she still was. Throughout the conversation, Phyllis speaks candidly about living with dementia day to day. She challenges the idea that diagnosis equals disappearance, and explains how capacity, autonomy, and consent can fluctuate without vanishing. She shares how she continues to assess her own abilities, adapt when needed, and assert her right to be involved in decisions about her life. Andrew and Phyllis also explore how dementia becomes a human rights issue, not only in policy rooms, but in ordinary interactions. Phyllis draws from her work with provincial, national, and international bodies, including advisory roles and advocacy at the ⁠United Nations⁠, to explain how people living with dementia are often invited into conversations symbolically but excluded in practice. She speaks openly about tokenism, stigma, and the emotional cost of constantly having to prove you are still capable. The episode also touches on the importance of creativity, intergenerational relationships, and purpose. Phyllis shares how staying engaged, writing, speaking, and connecting with children and grandchildren has helped her maintain identity and meaning, even as she navigates change. Rather than framing dementia as a story of loss alone, she offers a more complex and honest account of what remains. Throughout the episode, Phyllis challenges common assumptions about dementia, including who it affects, how capacity is understood, and why silence and exclusion often cause more harm than the disease itself. In this episode: • What changes socially after a dementia diagnosis, even when the person is still present • How being treated differently can erode dignity long before abilities are lost • What capacity and consent look like when cognition fluctuates • Why living with dementia is also a human rights issue • How advocacy rooted in lived experience differs from policy on paper • The role of creativity, purpose, and connection in living well with dementia • Why claiming your voice matters, even when systems are uncomfortable listening Whether you are living with dementia, supporting someone who is, or trying to understand dementia beyond stereotypes and clinical language, this conversation offers clarity, honesty, and a powerful reminder that diagnosis does not erase personhood. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠ ⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠⁠⁠⁠⁠ Disclaimer: The information shared in this podcast is for general informational purposes only and is not intended as medical advice. It should not be used to diagnose, treat, or prevent any medical condition. Always consult your physician or another qualified healthcare provider regarding any questions you may have about a medical condition or treatment. The views and opinions expressed by guests are their own and do not necessarily reflect those of Andrew Karesa, blueBell Village Ltd., or any of its employees, contractors, or team members. 1:3:56
YouTube Video UExxYWcwUU01bW5IaEN3dFNkQ21kOUFFTE1FYUtYSHM2SC4wRjA0RDE2QTUwMTk2MkY2

Claiming Your Voice When Systems Try to Silence You (with Phyllis Fehr)

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Want more informative and impactful demetia content? Check out The Dementia Collective for more information.