You may know your loved one better than almost anyone. You know their history, preferences, routines, personality, and the things that help them feel safe and understood. But what happens when more people become involved in their care? A family member may be coordinating care. A companion caregiver may visit. A home-care provider may come into the home. Different organizations may become involved. Each person may see something different, notice something different, or communicate only part of what they know. And when that information doesn't stay connected, something important about the person—and about what is actually happening—can be missed. That is what Andrew Karesa experienced while his family cared for his grandmother through Alzheimer's. As her needs changed, more people became involved in her care, creating a need to keep important information connected across the caregiving situation. In this episode, Andrew shares how that experience eventually inspired him to take action and create blueBell Village, with a focus on restoring the personhood and independence of people living with dementia. When Important Care Information Gets Lost In this episode, we will explore: How Andrew's engineering background shaped the way he initially understood problems and caregiving What his grandmother's Alzheimer's journey taught him about the realities of caregiving How one family caregiver gradually became a larger network of people providing care Why adding more caregivers and organizations can create communication challenges How information can become disconnected when different people see different parts of the situation Why knowing the person—not simply the diagnosis—matters in providing care How family members used binders, notes, conversations, and other ways to keep track of important information Why Andrew began looking for a way to connect families and care providers around the person receiving care How personal history, culture, language, and preferences can affect the way care is provided Why information retained over time can help caregivers recognize patterns How keeping important information available can help caregivers better understand what is actually happening Why having information is not the same as understanding what that information means within the caregiving situation Episode Timestamps 00:07 — Engineering to Caregiving 02:28 — Care Becomes Complex 05:54 — Subjectivity in Care 09:05 — Why Systems Fail 11:15 — Building Caregiving Bridges 13:31 — Dignity, Order, Truth 16:47 — Simplicity Reduces Strain 19:14 — Personal History Matters 22:58 — Pattern Recognition in Dementia When One Caregiver Becomes Many Andrew's family caregiving arrangement changed over time. His aunt initially carried much of the caregiving responsibility. As his grandmother's needs changed, the family began bringing in people from the community, companion caregivers, and eventually home-care providers. The caregiving situation was no longer being carried by one person. More people meant more observations, more responsibilities, and more information that needed to stay connected. The challenge wasn't necessarily that people weren't trying to help. The challenge was that each person could see only part of the caregiving situation. More People Can Mean More Information to Keep Connected When several people provide care, everyone may see something different. One caregiver may notice a change in behavior. A family member may know the person's history. Another caregiver may understand a particular routine. A home-care provider may observe something during a specific part of the day. When those observations remain separated, each person may be working from only part of what is known. Andrew's experience showed him how easily important information can become disconnected as the caregiving network grows. Information Is Important—But What Does It Mean Here? This episode isn't about telling caregivers that they simply need to collect more information. Information matters. But having information does not automatically tell you what that information means within the caregiving situation you are actually living in. You may know: What someone observed What happened during an appointment What a professional recommended What the person prefers What happened yesterday What has worked before What another caregiver noticed The remaining question can be: What does all of this tell us about what is actually happening now? That distinction matters because the caregiver may need to understand what has changed, what remains reliable, what different people need to know, and what the caregiving arrangement now requires. When Information Lives in One Person's Head Caregivers can end up carrying enormous amounts of information mentally. They may remember appointments, medications, preferences, observations, people coming into the home, changes over time, and details about what works and what doesn't. Andrew saw the value of putting important information into a place where the people involved in care could access it. That can reduce the amount one caregiver has to carry alone and help prevent important information from being lost. But the larger question remains: What does the information show about the person and the caregiving situation? Dignity, Order, and Truth Andrew describes his approach to care through the ideas of dignity, order, and truth. For him, person-centered care means understanding enough about the person to interact with them appropriately rather than continually guessing. That understanding can include: Their history Their culture Their language Their preferences Their background Information relevant to their care Patterns that become visible over time This becomes particularly important when someone outside the family begins providing care. That person may not have the years of experience or cultural understanding that family members have. Christian Care Does Not Erase the Person Andrew also discusses the importance of providing care that is clinically valid, personally specific, and culturally appropriate. For Christian caregivers, this raises an important question about how we honor the person entrusted to our care. Faithful caregiving does not require treating every person as though the same approach should work for everyone. The person remains a person—with a history, relationships, preferences, culture, and circumstances that matter. Keeping Information Connected Can Help Reveal Patterns When information is available over time, another possibility emerges: Patterns can become visible. A single observation may not seem significant. But when observations are retained, caregivers may begin to see that something is happening repeatedly—or that different pieces of information are connected. This can be especially important in dementia caregiving, where an individual event may be difficult to understand on its own. Keeping information available over time can help the caregiver see more of what has actually been happening rather than relying entirely on memory or isolated observations. The Caregiving System Is More Than the Information Keeping information available is valuable. But the work does not end with having the information. The caregiver may still need to understand: What has actually changed What remains reliable Which observations matter to the current situation What belongs to whom Which responsibilities are actually hers What authority exists What another caregiver or household needs to account for What needs attention now What can wait That is why Caregiving System Advising is not simply information management. It is about making the actual caregiving situation visible so the caregiver can understand what the information means within the system she is responsible for stewarding. Caregiving Changes as the Situation Changes Andrew's family experienced how caregiving can change over time. The arrangement may begin with one person carrying most of the responsibility. Then additional people become necessary. New services may be added. Different households may become involved. More information may need to be shared. What worked before does not necessarily stop working completely. Instead, the caregiving situation may require something different as their dependency and your circumstances change. The task is to recognize what remains the same, what is different, and what that difference now requires. Determine What the Information Means You may already have the information. You may have years of memories, notes, medical information, family observations, professional recommendations, and knowledge about the person you love. The question may not be: “What else do I need to know?” It may be: “What does what I already know mean within the caregiving situation I have right now?” That is where interpretation matters. The caregiving system has to account for the person, the people involved, responsibilities, authority, circumstances, resources, relationships, and limits. And from there, you can begin to determine what's next. About Andrew Karesa Andrew Karesa is a member of the Muskeg Lake Cree Nation and a proud husband and father of two young sons. After witnessing how his family coped to support his grandmother with her Alzheimer's diagnosis, Andrew realized he needed to take action. This inspired the creation of blueBell Village, aimed at Restoring the Personhood and Independence of those living with dementia™. With blueBell, Andrew has seen lives transformed for both individuals living with dementia and their caregivers, and he is passionate about fostering a world where care is tailored to each individual's needs. Additionally, he is pursuing his doctorate at the University of Calgary, where his research explores Indigenous entrepreneurship in the health sector. Andrew also holds an MBA from the Univers
