The Dementia Collective

blueBell Village

Caring for someone with dementia can feel overwhelming but you don’t have to do it alone. The Dementia Collective is a podcast for caregivers seeking real support and fresh ideas. Hosted by Andrew Karesa, founder of blueBell Village, each episode features conversations with caregivers, clinicians, and innovators who bring practical insights, lived experience, and unexpected resources to light. Whether it’s navigating daily challenges, learning about emerging supports, or hearing stories from others on the journey, this podcast is here to help. We’re here to walk alongside you

  1. Why Men Struggle to Ask for Help in Dementia Care (with Ron Beleno)

    2D AGO

    Why Men Struggle to Ask for Help in Dementia Care (with Ron Beleno)

    Why do so many men struggle to ask for help when caring for someone living with dementia? In this episode of The Dementia Collective, Andrew Karesa sits down with Ron Beleno, caregiver advocate and leader in the aging and dementia space, to explore the role men play in dementia caregiving and why many feel pressure to handle the responsibility alone. Ron begins by sharing his own caregiving journey after his father was diagnosed with dementia in 2007. Over more than a decade of supporting his father, Ron experienced firsthand the emotional and practical realities of caring for a parent with dementia, and how that experience shaped the work he does today supporting caregivers across Canada. Much of the conversation centers on the expectations many men carry when they step into caregiving roles. Ron reflects on the pressure to remain strong for the family, to manage dementia care independently, and how those expectations can make it difficult for male caregivers to ask for help or build support networks early in the journey. Andrew and Ron also explore the idea of the care team and why dementia caregiving becomes far more sustainable when responsibility is shared. Rather than trying to manage everything alone, Ron speaks about the importance of inviting others into the journey, whether family members, friends, community supports, or what he describes as “caring community members.” The conversation also touches on caregiver mindset and the internal conversations many caregivers have with themselves. Ron discusses how stress, responsibility, and cultural expectations can shape the way caregivers think about their role, and how reframing those expectations can help families navigate dementia with greater confidence and connection. Throughout the episode, Ron returns to a consistent theme: that caregiving does not need to be carried alone. Building a care team early can transform the experience not only for the caregiver, but for the person living with dementia as well. In this episode: • Why men are often underrepresented in dementia caregiving conversations • The pressure many male caregivers feel to manage dementia care alone • Why asking for help can feel difficult for men caring for a parent with dementia • The importance of building a care team early in the caregiving journey • How caregiver mindset shapes the dementia caregiving experience • The role of caring community members in dementia support networks • Why sharing responsibility can make caregiving more sustainable Whether you are caring for a parent with dementia, supporting a loved one living with Alzheimer’s disease, or trying to better understand the caregiving experience, this conversation offers thoughtful insight into the challenges many families quietly navigate and the importance of building support along the way. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca⁠https://www.ronbeleno.comhttps://wecanbe.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.

    1h 26m
  2. She’s Still There: Separating Alzheimer’s from the Person You Love (with Erin Chalmers)

    MAY 13

    She’s Still There: Separating Alzheimer’s from the Person You Love (with Erin Chalmers)

    What does it mean to love someone whose personality is changing and to slowly realize it is not them? In this episode, Andrew Karesa sits down with Erin Chalmers, co-anchor of Global Edmonton Morning News, daughter, caregiver, and Board Member of the Alzheimer Society of Alberta and Northwest Territories, to talk about her mother’s Alzheimer’s diagnosis and the quiet shift from confusion to clarity that many families experience. Erin shares what the first signs looked like in 2022, the moment her family realized something deeper was happening, and the decision to be proactive instead of reactive. She opens up about sitting down with her mom early to talk through care preferences, navigating a system that can feel fragmented, and learning to separate the disease from the person she loves. The conversation moves beyond logistics. Erin reflects on how caregiving reshaped her identity, how she learned not to take certain behaviours personally, and why the phrase “that’s the disease” became a turning point in her understanding. She speaks candidly about advocating during a hospital stay, the emotional weight of watching cognition fluctuate, and the importance of day programs and structured support for caregivers. Together, Andrew and Erin explore what meaningful caregiver support actually looks like in Alberta, why the system often relies heavily on families to coordinate care, and what she hopes changes for the next generation. They also discuss what initially drew her to blueBell Connect, the importance of centralized communication within family care teams, and the kind of families who would benefit most from a personalized coordination tool. In this episode: • The early signs families often question or dismiss • Why being proactive after diagnosis matters • How to separate the disease from the person • What hospital experiences reveal about gaps in dementia care • The emotional cost of caregiving and how to avoid losing yourself • Why day programs can be a lifeline for families • What meaningful caregiver support in Alberta should look like • How centralized communication tools can reduce stress and confusion Whether you are walking through a new diagnosis, supporting a parent from a distance, or working within the healthcare system, Erin’s story is a reminder that even as memory changes, identity and dignity remain. Connection is still possible. She is still there. 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.

    1h 19m
  3. Where’s the Plan for Dementia Care in Canada? (with Dr. Saskia Sivananthan)

    MAY 6

    Where’s the Plan for Dementia Care in Canada? (with Dr. Saskia Sivananthan)

    What if the problem isn’t whether Canada has a dementia strategy, but whether families can actually feel it? In this episode, Andrew Karesa sits down with Dr. Saskia Sivananthan to examine the gap between Canada’s National Dementia Strategy and the lived reality of families, clinicians, and communities trying to navigate brain change. Drawing on her experience working at the intersection of research, policy, and national coordination, Dr. Sivananthan unpacks what strategy is supposed to do, where implementation breaks down, and how funding decisions shape what support is actually available on the ground. Together, Andrew and Saskia discuss federal leadership, provincial variation, accountability, and why a plan on paper does not automatically translate into coordinated care. The conversation moves beyond individual caregiving stories to ask a broader systems question: if we say we have a national plan, what would it look like for families to experience it as one? In this episode: • What Canada’s National Dementia Strategy was designed to accomplish • How funding shifts affect coordination and long-term impact • The difference between announcing a strategy and implementing one • Why fragmentation across provinces continues to shape care experiences • The role of accountability in national health initiatives • Where Canada lags and where it shows leadership globally • What meaningful national alignment in dementia care could actually look like Whether you are a caregiver, policymaker, clinician, researcher, or someone trying to understand how dementia care is structured in Canada, this conversation offers a grounded look at the systems behind the support families depend on. Learn more at:⁠⁠⁠https://www.bluebellvillage.ca⁠⁠⁠⁠ ⁠https://brainwellinstitute.org https://www.saskiasivananthan.comDisclaimer: 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.

    1h 12m
  4. The Practice of Joy in Dementia Care (with Carrie Aalberts)

    APR 29

    The Practice of Joy in Dementia Care (with Carrie Aalberts)

    What happens to joy when dementia enters the picture? When routines change, roles shift, and caregiving becomes heavier than anyone expected, is joy still possible, or does it quietly disappear? In this episode of The Dementia Collective, Andrew Karesa sits down with Carrie Aalberts, gerontologist, dementia educator, and founder of Dementia Darling, to explore why joy still matters in dementia care and how it can exist alongside grief, exhaustion, and uncertainty. Carrie shares her personal journey into dementia care, shaped by her grandmother’s diagnosis and years working inside senior living, adult day programs, and community-based care. She reflects on what surprised her early on, including how often families were left without guidance, and how those experiences reshaped her understanding of dignity, empathy, and what meaningful care actually looks like. Much of the conversation centers on joy, not as positivity or denial, but as an intentional and evolving practice. Carrie explains how joy changes throughout the dementia journey, why it looks different than it once did, and how caregivers can find moments of connection even in the most difficult seasons. She emphasizes presence, slowing down, and letting go of unrealistic expectations placed on both caregivers and people living with dementia. Andrew and Carrie also explore the role of children in dementia care, sharing why intergenerational spaces can foster empathy, normalize aging, and create powerful moments of connection. They discuss how community-based models challenge the isolation many families experience, and why caregiving should never be a solitary endeavor. The conversation turns to systemic barriers in dementia care, including cost, staffing shortages, and the emotional toll placed on family caregivers who are often forced to navigate complex systems with little support. Carrie speaks candidly about burnout, grief, and the need for better structures that honor both caregivers and care workers. Throughout the episode, they examine how technology can enhance care when used thoughtfully, from virtual reality and remote support tools to digital education platforms that meet caregivers where they are. Rather than presenting technology as a replacement for human connection, Carrie frames it as a way to reduce burden, expand access, and preserve dignity. In this episode: • Why joy still matters in dementia care • How joy changes throughout the caregiving journey • The emotional reality caregivers rarely talk about • Why intergenerational care benefits both children and elders • Systemic barriers families face when seeking support • How technology can enhance connection and quality of life • What dignity-centered dementia care really looks like Whether you are a caregiver, a professional, or someone walking alongside a loved one with dementia, this conversation offers reassurance, honesty, and a grounded reminder that joy does not disappear with diagnosis. It changes, it deepens, and it still belongs. Learn more at: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.bluebellvillage.ca ⁠https://www.dementiadarling.com 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.

    1h 22m
  5. Harder Than Being Governor: Caring for My Wife with Alzheimer’s (with Governor Martin J. Schreiber)

    APR 22

    Harder Than Being Governor: Caring for My Wife with Alzheimer’s (with Governor Martin J. Schreiber)

    What does it mean when a former governor says caregiving was harder than public office? In this episode, Andrew Karesa sits down with former Wisconsin Governor Martin J. Schreiber, author of My Two Elaines, for a deeply personal conversation about loving, caring for, and slowly losing his wife Elaine after her Alzheimer’s diagnosis. Marty brings a perspective few people can offer. He has lived in the world of leadership, policy, and public responsibility, yet says the hardest role he ever held was caregiver. What unfolds in this conversation is not a political discussion, but a human one. It is about what dementia asks of a family, how caregiving changes your identity, and why so many people are unprepared for what the journey really becomes. Together, Andrew and Marty explore the emotional reality of caring for someone whose mind is changing over time. Marty reflects on the idea behind My Two Elaines: that the woman he loved was still there, but Alzheimer’s required him to relate to her differently. In turn, he had to become a different version of himself too. The conversation also explores the hidden toll caregiving takes on families, why caregivers must protect their own health, and what governments still fail to understand about supporting families living with dementia. In this episode: • Why caregiving was harder than being governor • The meaning behind My Two Elaines • How dementia changes both the person diagnosed and the caregiver • Why arguing with dementia often makes things worse • The emotional toll caregiving takes on spouses and families • Why caregivers must protect their own health • What policymakers still misunderstand about dementia care Whether you are caring for a spouse, supporting a parent, or trying to understand how dementia reshapes a family, this conversation offers honesty, perspective, and a reminder that even when memory changes, connection still matters. Learn more at:⁠⁠⁠⁠⁠⁠⁠ https://www.bluebellvillage.ca ⁠⁠⁠⁠⁠⁠⁠⁠https://mytwoelaines.com/index.php/about-martin/ 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.

    1h 3m
  6. Can Dementia Separate Us From God? (with Elisa Bosley)

    APR 15

    Can Dementia Separate Us From God? (with Elisa Bosley)

    What happens to faith when memory fades, words disappear, and the person we knew begins to change in ways that feel unfamiliar, or even unsettling? In this episode of The Dementia Collective, Andrew Karesa sits down with Elisa Bosley, chaplain and founder of SpiritualElderCare.com, to explore how faith, music, and presence continue to matter in dementia care, especially near the end of life. Elisa begins by sharing her own origin story and how she was drawn into chaplaincy work with older adults. She reflects on what first surprised her when accompanying people living with dementia, and how those early experiences reshaped her understanding of faith, identity, and what it truly means to offer spiritual care. Much of the conversation centers on music, particularly hymns, and why they so often reach people long after other forms of communication have fallen away. Elisa explains how familiar songs can act as a bridge to comfort, connection, and peace, even when cognitive decline is advanced, and why music frequently carries spiritual meaning when spoken theology no longer does. Andrew and Elisa also explore the tension many families feel when a loved one’s beliefs or behaviours near the end of life seem incongruent with who they were earlier. They discuss common fears about faith, salvation, and whether dementia can somehow sever a person’s relationship with God. Rather than offering simplistic answers, Elisa speaks from her experience walking alongside individuals and families in long term care, emphasizing presence, reassurance, and trust over correction or fear. The conversation addresses chaplaincy in diverse care settings, including how Elisa approaches interfaith spaces with sensitivity and respect. She reflects on the difference between supporting someone spiritually and evangelizing them, and why honoring a person’s history, values, and sense of safety matters far more than imposing belief. Throughout the episode, Elisa returns to a consistent theme: that dignity, comfort, and connection are not lost simply because cognition changes. She shares what she has witnessed again and again in long term care, moments where peace, familiarity, and faith surface quietly through song, touch, or presence. In this episode: • Why hymns often reach people late in dementia • How music can act as a bridge to comfort and faith • What families fear when beliefs seem to change near the end of life • Whether dementia can affect a person’s relationship with God • The difference between spiritual support and evangelization • How chaplains navigate interfaith spaces in long term care • What brings peace and dignity near the end of life Whether you are a caregiver, a family member, or someone wrestling with questions about faith, memory, and meaning in dementia, this conversation offers reassurance, reflection, and a grounded reminder that presence often speaks louder than certainty. Learn more at:⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ https://www.bluebellvillage.ca⁠ https://spiritualeldercare.com 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.

    57 min
  7. Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds)

    APR 8

    Good Dementia Care Isn’t Perfect (with Dr. Natali Edmonds)

    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 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.

    1h 10m

Ratings & Reviews

5
out of 5
7 Ratings

About

Caring for someone with dementia can feel overwhelming but you don’t have to do it alone. The Dementia Collective is a podcast for caregivers seeking real support and fresh ideas. Hosted by Andrew Karesa, founder of blueBell Village, each episode features conversations with caregivers, clinicians, and innovators who bring practical insights, lived experience, and unexpected resources to light. Whether it’s navigating daily challenges, learning about emerging supports, or hearing stories from others on the journey, this podcast is here to help. We’re here to walk alongside you