In Conversation with Amy Shaw on Training Caregivers for the Dementia Journey

Training caregivers for the dementia journey is about far more than teaching routines or task checklists — it’s about equipping people with a deep understanding of what is actually happening in the minds and lives of those they support.

Dementia isn’t a static condition; it evolves, reshapes thinking, behavior, and communication. Without foundational knowledge of how the brain changes over time, caregivers can feel unprepared, frustrated, or overwhelmed when predictable challenges arise. Yet when caregivers understand the why behind resistance to care, agitation, or memory loss, their whole approach transforms.

They begin to anticipate needs rather than simply react to problems, bringing calm, confidence, and connection to each interaction. Effective training should be structured, grounded in real-world caregiving scenarios, and paced so that learning builds on itself. It needs to empower caregivers — not overload them — and give them tools they can return to again and again as dementia progresses.

Ultimately, training that prioritizes understanding over rote instruction elevates caregiving from routine to responsive, compassionate care that honors dignity and supports families through every stage of the journey.

To shed some light on the same, we interviewed a home care industry expert to bring her perspective on training caregivers for the dementia journey.

Let us now delve into what she has to say about training caregivers for the dementia journey.

Question 1: What are the most common dementia-related behaviors or care challenges you see that home care agencies are often unprepared for — and what practical strategies can caregivers use on the ground?

In my work with family and professional caregivers, the biggest gap I see is that agencies are often trained on tasks and routines, but not on how dementia changes the brain over time. Without that framework, caregivers are unprepared for predictable challenges that can lead to agitation, resistance to care, and frustration for both the caregiver and the person living with dementia.

The foundation of my work—and of the Better Dementia™ education framework—is what I call The Power of Knowing. When caregivers understand what is happening in the brain, why behaviors change, and what to expect next, their entire approach to care shifts. Understanding comes first. The “how” of caregiving follows.

Question 2: How can agencies better train non-medical caregivers to recognize and respond to cognitive changes as dementia progresses, without overwhelming staff?

Training works best when it is structured, progressive, and grounded in real-world caregiving rather than medical jargon. Caregivers need a clear framework for recognizing patterns and understanding when care needs to change.

Short, focused education that explains how cognition changes over time—and how caregiving must evolve alongside those changes—allows caregivers to build confidence without overload. Education should be something caregivers can return to as dementia progresses, not a one-time orientation.

This is the approach used throughout Better Dementia™, where families, home care agencies, and care facilities can access clinically grounded, self-paced education online at BetterDementia.com. The education is comprehensive, guiding caregivers through the full dementia journey—from early changes and disease progression to medical realities, psychiatric symptoms, caregiving support options, complex care decisions, and end-of-life considerations.

Question 3: What are the key markers or stages of dementia that agencies should be teaching families to anticipate so care plans can stay ahead of evolving needs?

Rather than memorizing clinical labels like mild, moderate, or severe, families and caregivers benefit most from understanding that dementia follows a predictable progression. The focus of my work is helping caregivers recognize when meaningful changes are occurring and what those changes signal about evolving care needs.

Within the Better Dementia™ Journey Framework, caregivers are taught to recognize the predictable milestones of loss that define the dementia journey, allowing care plans to be adjusted proactively rather than in moments of crisis. When caregivers understand that these losses are expected—and not random—they are better prepared to respond with confidence and clarity.

This focus on anticipating change rather than reacting to crisis also forms the foundation of my ongoing work on the dementia journey, including my upcoming book on the dementia journey and caregiving across the full course of the disease.

Question 4: How can home care agencies support family caregivers emotionally and practically between visits — especially when families feel stressed, uncertain, or overwhelmed?

Families struggle most when they do not understand what is happening or what comes next. Much of caregiver distress is rooted in uncertainty rather than the work of caregiving itself.

Agencies can support families by directing them to appropriate, consistent educational resources that normalize what they are seeing and explain how dementia changes over time—so families are not forced to make complex decisions without understanding.

Families, agencies, and care facilities can access this type of clinically grounded education online through the website, where caregivers can learn at their own pace and return to the material as needs evolve. In addition, I work with a limited number of families privately to provide personalized guidance and support, helping ensure a better dementia journey for everyone involved.

Question 5: What communication techniques have you found most effective for caregivers when interacting with someone with dementia, particularly during moments of agitation or confusion?

Effective communication improves naturally with understanding. When caregivers are taught the what, when, and why of dementia, they are better able to adapt how they communicate from a place of compassion rather than frustration.

Without that understanding, caregivers may misinterpret behaviors as stubbornness, manipulation, or lack of effort. When caregivers understand what is happening in the brain and why communication changes over time, they are better able to maintain connection, reduce conflict, and uphold dignity. Dementia does not have to be a journey defined by constant distress—when understanding leads, care becomes calmer, more connected, and more humane.

At a deeper level, caregiver education is also an issue of patient autonomy. When families lack accurate understanding, meaningful patient choice is undermined. This principle—respecting autonomy through informed understanding—is central to my work and is the underlying premise of my medical textbook, The Arc of Conversation: A How-to Guide for Goals of Care Conversations.

In conclusion

Amy Shaw’s insights make one thing clear: understanding dementia transforms caregiving. Training that goes beyond tasks and embraces the predictable progression of the disease gives caregivers and families the confidence to anticipate change rather than react to crisis.

When agencies prioritize education that explains the “what, when, and why” of dementia, care becomes calmer, more connected, and deeply humane. Guided by evidence and grounded in real-world experience, this approach not only supports caregivers but also preserves dignity and empowers families through every stage of the dementia journey. Compassionate care starts with understanding — and it changes everything.