Every June, the world turns purple for Alzheimer’s and Brain Health Awareness Month, a time to pause, reflect, and take real action. This year, Learn2Care gathered nine leading voices in dementia care: certified practitioners, front-line caregivers, educators, and advocates. We asked them three questions. What is the hardest part of caregiving? What myths are still hurting families? And what does real, lasting change look like? Their answers were honest, powerful, and deeply human. This roundtable brings those voices together, not as a list, but as a living conversation, to give you a fuller, truer picture of dementia care today.
More than 6.9 million Americans are currently living with Alzheimer’s disease. By 2050, that number is projected to nearly double to 13 million, according to the Alzheimer’s Association. Behind every one of those numbers is a family, a spouse, a daughter, a son, a sibling, doing their absolute best to hold everything together, often without enough training, rest, or support.
June is Alzheimer’s and Brain Health Awareness Month. At Learn2Care, we believe awareness without action is just noise. So, this year, we went straight to the people who live and breathe dementia care every single day. We asked nine experts to speak plainly about what is working, what is not, and what needs to change right now.
Read this for guidance as a healthcare professional wanting to strengthen your team’s dementia care best practices for caregivers. Or read it simply as a community member who wants to understand. All of it matters. All of it is needed.
The biggest challenge is a combination of caregiver burnout, lack of proper Alzheimer caregiver training, and the absence of affordable support. Many caregivers do not know how to read behavioral changes as communication, which leads to frustration on both sides. Research shows that between 30, and 70 percent of caregivers die before the person they are caring for, depending on age group (Family Caregiver Alliance, 2023).
Caregiving for someone with Alzheimer’s is not a part-time role. It is an around-the-clock commitment that touches every corner of a person’s life: their sleep, their finances, their relationships, their own health, and their sense of who they are. When we asked our experts to name the single biggest challenge caregivers face, their answers were different in detail but united in depth.
Most people assume the hardest part of dementia caregiving is the physical labor. But the data tells a far more alarming story: one about the caregiver’s own survival.
Statistically, up to 32% of the primary caregivers die before the person for whom they are providing care.
“The biggest challenge caregivers of persons with Alzheimer’s and related disorders face is self-care. Statistically, up to 32% of the primary caregivers die before the person for whom they are providing care,” she says. Care, often called “the 36-hour day,” a phrase coined by author Nancy Mace, demands time, energy, and resources that most families simply cannot sustain. Finding outside help, Huey notes, creates guilt and is rarely welcomed by the person living with the disease.
Balancing family and caregiving responsibilities in a way that allows time for necessary self-care in order to stay healthy and continue being a caregiver is the core challenge.
She brings equally sobering data to the table. Depending on the caregiver’s age, between 30 and 70 percent of caregivers die before the person they are caring for (Family Caregiver Alliance). The answer, she argues, is not telling caregivers to do less; it is helping them build sustainable daily structure
“Balancing family and caregiving responsibilities in a way that allows time for necessary self-care in order to stay healthy and continue being a caregiver is the core challenge,” Freed says. Her organization advocates for reliable daily routines that include even just five to thirty minutes of self-care. Small, consistent habits, she has found, are what allow caregivers to keep going without falling apart.
When a caregiver leaves the workforce entirely to provide full-time care, reentering it later becomes extremely difficult, compounding both financial and emotional stress for years to come.
While burnout plays out quietly, the financial crisis of caregiving is concrete and crushing. Alder Allensworth, Co-Founder, Mackenzie Meets Alzheimer’s Project, draws attention to the economic reality millions of families face in silence.
“The biggest challenge is the lack of affordable support,” he says. “Caregivers are not only providing care to a loved one, but they are also trying to work, pay bills, and care for their home and family. It can be overwhelming.” The cost of hiring in-home help is high, and residential care facilities are out of reach for most. When a caregiver leaves the workforce entirely to provide full-time care, reentering it later becomes extremely difficult, compounding both financial and emotional stress for years to come.
| Statistic | Figure | Source |
| Americans currently living with Alzheimer’s | 6.9 million | Alzheimer’s Assoc., 2024 |
| Projected cases by 2050 | 13 million | Alzheimer’s Assoc., 2024 |
| Caregivers who die before the person they care for | 30–70% (by age) | Family Caregiver Alliance, 2023 |
| Primary caregivers who die before their loved one | Up to 32% | Jo (McDonnell) Huey, ACI |
| Estimated annual cost of unpaid dementia caregiving | $346 billion | Alzheimer’s Assoc., 2024 |
| Average hours per week a caregiver provides care | 47 hours | Natl. Alliance for Caregiving, 2020 |
| Caregivers who report high emotional stress | 59% | Alzheimer’s Assoc., 2024 |
Everyone’s dementia journey is different, and there is so much information available, it’s often overwhelming.
Jane Unwin
Dementia Care Navigator & Coach
Beyond money and burnout, there is the challenge of not knowing what comes next. Jane Unwin, Dementia Care Navigator & Coach speaks to something many caregivers feel but rarely name out loud.
“One of the biggest challenges caregivers face is knowing what is coming next and how to be prepared for it,” she explains. “Everyone’s dementia journey is different, and there is so much information available, it’s often overwhelming.” Rather than feeling guided, many caregivers feel buried under conflicting advice, unsure what to trust, what to try, and what to expect as the disease progresses.
Many caregivers also carry guilt, exhaustion, and deep uncertainty about whether they are doing enough, she notes.
Alexia brings the emotional dimension of caregiving into sharp focus, specifically, the grief that begins long before a loved one passes. “One of the greatest challenges caregivers face is coping with the emotional impact of watching someone they love gradually change due to the disease,” she says. Dementia, she explains, creates a cycle of grief that caregivers experience while their loved one is still alive: mourning the person they knew, the relationship they had, and the future they imagined. Many caregivers also carry guilt, exhaustion, and deep uncertainty about whether they are doing enough, she notes.
When caregivers receive proper memory care training and learn updated communication strategies, she has found, everything shifts.
She has seen one pattern repeat more than almost any other: caregivers using communication strategies that no longer fit the disease.
“Caregivers are often trying to communicate and problem-solve using approaches that worked before the dementia,” she explains, “which can lead to frustration, stress, and emotional exhaustion for everyone involved.” When caregivers receive proper memory care training and learn updated communication strategies, she has found, everything shifts — they feel more confident, less overwhelmed, and far better equipped to protect their loved one’s quality of life.
One of the most important and most overlooked truths in dementia care is that behavior is communication.
The gap in Alzheimer’s caregiver training around this single concept creates so much unnecessary suffering.
“The biggest challenge is that most caregivers aren’t given a real understanding of what dementia does to the brain, and how that directly affects a person’s ability to communicate their needs,” she says. “When someone with dementia can no longer find the words to say they’re in pain, scared, overstimulated, or uncomfortable, their behavior becomes the message.” Without that foundational understanding, caregivers are left reacting to behavior rather than reading it, creating frustration on both sides and missing opportunities for genuine connection.
Now, with that context, here’s how the shift in caregiving looks up close:
As dementia progresses, the caregiving relationship changes dramatically and quietly.
As the partnership moves from 50/50 to 90/10, so does the need for self-care for the managing partner.
Cate McCarty
Dementia Care Coach, offers a striking image to capture this shift.
She says this gradual, often unnoticed escalation, where one person takes on nearly everything while the other can contribute less and less, is one of the most emotionally exhausting aspects of the entire caregiving journey. Recognizing that shift early, McCarty argues, is key to surviving it.
The biggest challenge is learning to adapt our approach as the disease changes a person’s abilities.
Heidi Thomas, Dementia Care Leader & Educator, ties the challenge together with a reframe that every caregiver needs to hear.
“The biggest challenge is learning to adapt our approach as the disease changes a person’s abilities,” she says. “Caregivers often focus on what has been lost, when success comes from recognizing what abilities remain and adjusting communication, expectations, and support accordingly.” This shift in perspective, from loss to remaining strength, is at the heart of effective, compassionate dementia care.
Dementia affects much more than memory. It changes thinking, emotions, and daily life in ways that go far beyond forgetfulness.
If there is one thing every expert in this roundtable agreed on, it is this: reducing Alzheimer’s and dementia to memory loss is not just inaccurate, it actively harms the people living with the disease and the families trying to care for them. When families carry a narrow view of what dementia does, they misread behaviors, miss opportunities for connection, and respond in ways that increase distress rather than reduce it.
| Brain Function | How It Is Affected | Examples |
| Memory | Impairs short and long-term recall | Forgetting names, recent events, familiar places |
| Judgment & reasoning | Reduces ability to make decisions | Unsafe choices, difficulty problem-solving |
| Emotional regulation | Heightens emotional responses | Sudden anger, tears, expressions of love |
| Language & communication | Affects word-finding and comprehension | Struggling to express needs, misunderstanding conversations |
| Perception | Distorts how the environment is experienced | Seeing or hearing things others do not |
| Balance and gait | Affects physical coordination | Increased fall risk, shuffling walk |
| Music & emotional memory | Often preserved longer than other functions | Responding to familiar songs, recognizing loved ones through feeling |
| Behavior | Becomes the primary form of communication | Agitation, repetition, wandering — all signals of unmet needs |
Jo (McDonnell) Huey pushes back on this directly. “The misconception about persons with Alzheimer’s and related disorders is that the person is gone,” she says.
“The misconception about persons with Alzheimer’s and related disorders is that the person is gone,” she says. The role the person once fulfilled may no longer be visible; however, there is a real person there. This person’s feelings are heightened. They are quicker to anger, tears, expressions of love and caring than they might ever have been.” Huey urges families to concentrate on what the person can still do, rather than mourning only what they have lost. Doing so, she says, improves quality of life for everyone involved.
The idea that dementia is “just about memory” is one of the field’s most persistent myths, and one that Loretta Shacklett works to dismantle through her dementia education programs.
“One of the most common misconceptions is that dementia is only about memory loss,” she says. “In reality, dementia affects communication, judgment, emotions, perception, behavior, and the ability to process information.” In her Montessori Concepts in Dementia Care Seminar, Shacklett teaches participants to shift focus from what has been lost to what abilities remain, because individuals living with dementia still have strengths, preferences, emotions, and a desire for purpose and connection.
See how “Alzheimer’s” and “Dementia” are connected — and why the difference changes everything about how you provide care:
A common assumption people make about someone with Alzheimer’s is that the person has lost all awareness of what is happening around them. Alder Allensworth challenges this belief with care and nuance.
“One common misconception is that people living with Alzheimer’s disease are not aware of what is happening around them. In reality, they are often differently aware,” he explains. While many cognitive abilities are affected, he notes, some areas of the brain, particularly those involved in processing music and emotions, can remain remarkably strong. “Spending time with someone living with Alzheimer’s disease and interacting from a place of love, patience, and calm can make a meaningful difference in the lives of everyone involved,” he says.
Jane Unwin addresses a misconception that plays out in real-time, at kitchen tables and care home corridors every single day — the belief that you can reason a person with dementia out of their distress.
“The behavior people with dementia exhibit can be addressed by telling them the correct information rather than learning how to adapt,” she explains, is a deeply held but fundamentally flawed assumption. “Someone who is expressing anger or anxiety is often feeling uncomfortable or unsafe. Realizing that this is their way of communicating is key for carers to understand.” The goal, she says, is not to correct. It is to connect.
Alexis Ferrara brings a perspective that reframes how we see nearly every difficult moment in dementia caregiving. When a person with dementia acts out, resists, or becomes agitated, most people assume it is the disease making them difficult. Ferrara sees it differently.
“I often refer to dementia-related behaviors as reactions,” she says. “They are reacting to an environment they are unsure of, staff not properly trained, time of day, etc.” Understanding that behaviors stem from changes in the brain, not stubbornness or a lack of effort, can help families respond with empathy rather than frustration. This reframe, she argues, is one of the most important shifts that dementia care training for home care agencies can offer.
While diagnostic labels and symptom checklists are useful tools, Cate McCarty, PhD, CDP, warns against using them to predict exactly what a person’s dementia journey will look like.
“The misconception is that everyone with the labeled dementia will change in the same way,” she says. “We have to remind ourselves that each individual is different and each brain changes uniquely, so best not to over-compare.” Families who expect a textbook progression often find themselves confused or blindsided when their loved one’s experience looks different from what they read online. The disease, she reminds us, is never one-size-fits-all.
Carlyn Lenfestey urges caregivers, professionals, and communities to widen their understanding of what dementia actually affects, because memory is just the beginning.
“One of the biggest misconceptions is that Alzheimer’s and dementia only affect memory,” she says. “These diseases also impact judgment, reasoning, emotional regulation, language, visual perceptual skills, gait, and balance, among other things.” The narrow view of dementia as a memory disease, she explains, keeps families from understanding the full picture, including very real physical risks like falls, and from getting the right kind of help at the right time.
Brenda Freed offers one of the most tender and practical reframes in this entire roundtable, one that could change the way thousands of families show up for their loved ones.
“A person with the disease does not need to recall the name of a person to recognize love and understanding, or share in a joyful experience with that person,” she says. Too many families, she has found, get stuck in the disappointment that their loved one can no longer remember their name, and as a result, they pull back, assuming there is nothing meaningful left to share. Freed’s advice is simple and powerful: introduce yourself warmly, share a positive memory, and let the visit flow from there.
Heidi Thomas brings the misconception conversation back to the brain itself, because understanding what is physically happening is what allows caregivers to respond with patience instead of frustration.
“One of the most common misconceptions is that dementia only affects memory,” she says. “In reality, dementia changes how a person processes information, understands their environment, communicates, and responds to stress. Many behaviors that appear difficult are actually expressions of an unmet need or a brain that is struggling to make sense of the world.” This understanding, she argues, is the foundation of all good dementia care.
When we asked nine experts what the single most important step toward better dementia support looks like, eight of them landed on the same word: education. Not more funding alone. Not more staff alone. Education — deep, ongoing, disease-specific education that changes how people think, communicate, and respond at every level, from the family home to the professional care setting.
When we asked nine experts what the single most important step toward better dementia support looks like, eight of them landed on the same word: education. Not more funding alone. Not more staff alone. Education: deep, ongoing, disease-specific education that changes how people think, communicate, and respond at every level, from the family home to the professional care setting.
Jo (McDonnell) Huey is direct: training to understand the disease process, not just staffing numbers, is what transforms care.
“The most important step is training to truly understand the disease process and how it is manifested in each individual,” she says. “Facilities and communities need to focus on excessive and continuous training more than staffing numbers. Untrained caregivers create challenges in care and excessive staff turnover.” Family members, she adds, need training too, alongside grief counseling for the loss of the role their loved one once held in their life. “Training and understanding the disease manifestations is the most important solution and the one that is rarely sought.”
Loretta Shacklett has seen this transformation happen firsthand, across nearly a decade of work in both direct caregiving and professional dementia education.
“Education is the foundation of quality dementia care,” she says. “Whether you are a family caregiver, home care professional, nurse, social worker, or senior living community team member, understanding dementia changes everything.” Organizations that invest in dementia education and professional certification, she explains, are not just building skills — they are demonstrating a commitment to person-centered care that honors dignity, independence, and meaningful engagement. This is precisely what separates strong dementia care training for home care agencies from bare-minimum compliance.
Alder Allensworth takes a practical, community-level view of what better support looks like and points out that many valuable resources already exist, largely untapped.
“There are often valuable resources available that families do not fully utilize,” he says: a neighbor willing to sit with a loved one, someone who can pick up groceries, an out-of-state family member willing to take over for a few days so the primary caregiver can rest, or children who can include a loved one in everyday activities. Adult Day Centers, he notes, can provide social engagement and supervision at a cost far more affordable than residential care. He also recommends that primary caregivers consult with an elder law attorney to ensure financial resources are being used appropriately and future care needs are planned for.
Jane Unwin brings a structural recommendation that is simple in concept but transformative in practice — every person living with dementia, and their caregiver, needs an identified healthcare contact who follows them throughout the entire journey.
“Each person and their caregiver needs to have an identified health care person who can check on them regularly throughout their journey,” she says. “As the condition advances, the patient’s needs change, and so they and their caregiver require help and support to take them to the correct place for support.” Without that consistent point of contact, families fall through the cracks, especially during transitions between stages of the disease.
Alexis Ferrara frames the case for education in terms of its downstream effect, not just on individual caregivers, but on entire families and communities.
“Education is the most powerful tool we have,” she says. “When caregivers, healthcare professionals, businesses, and communities understand how dementia affects the brain, they can respond more effectively and compassionately.”
Providing access to dementia education, support groups, respite services, and specialized care resources empowers families to make informed decisions, reduces caregiver burnout, and improves quality of life for those living with the disease. Creating dementia-friendly communities, she adds, ensures that individuals are treated with dignity and understanding throughout every stage of their journey.
Cate McCarty, PhD, CDP, widens the conversation to include what organizations, not just healthcare providers but employers, can do to support the millions of working caregivers in their ranks.
“Offering support in as many ways as possible is what can make a difference from an organizational perspective,” she says. “Having virtual support groups, providing caregiving leave, and allowing remote work are all ways to support people living with Alzheimer’s and their families.” These are not perks. They are lifelines for caregivers who are trying to hold down a job while managing the equivalent of a second full-time role at home.
Brenda Freed makes a point that is easy to overlook: that dementia education needs to serve not just the primary caregiver, but the entire family, including children, across every stage of the disease.
“The most important step organizations, communities, or caregivers can take is to seek Alzheimer’s education resources that serve the whole family from diagnosis through the severe stage,” she says. Her organization, Mackenzie Meets Alzheimer’s, is built on this belief, offering tools accessible to all ages and all abilities, including those with visual and hearing impairments, and incorporating music to help even the youngest family members understand what their loved one is going through.
This is the foundation of every effective Alzheimer’s caregiver training program : not a checklist of tasks, but a genuine understanding of what the disease does to a human brain, and how that understanding transforms the way we care.
Good dementia care best practices for caregivers do not live in one place. They span every level of a person’s life. When support is built into each of these layers, the person living with dementia and the family around them both have a real chance to thrive.
| Level | Action | Why It Matters |
| Individual Caregiver | Daily self-care routine, even 5–30 minutes | Prevents burnout; caregivers who neglect health face serious mortality risk |
| Family Unit | Education from diagnosis through severe stage | Ensures every family member, including children, knows how to connect meaningfully |
| Home Care Professional | Alzheimer’s caregiver training and communication skills | Reduces staff turnover; improves care quality and resident dignity |
| Home Care Agency | Dementia care training for home care agencies | Builds organizational reputation; reduces liability; improves outcomes |
| Healthcare Provider | Assigned point of contact throughout the disease journey | Prevents families from falling through the cracks during stage transitions |
| Employer / Workplace | Caregiving leave, remote work, virtual support groups | Supports the 53 million unpaid caregivers who also hold jobs (NAC, 2020) |
| Community | Dementia-friendly businesses, Adult Day Centers, elder law resources | Creates safety nets that reduce isolation and financial devastation |
| Organization / Facility | Continuous training prioritized over staffing numbers alone | Untrained staff drive turnover; trained staff drive better outcomes |
Alzheimer’s and Brain Health Awareness Month gives us a moment to stop, look honestly at where we are, and recommit to doing better, for the people living with this disease, and for the extraordinary humans who care for them every day.
What this roundtable made clear is that the challenges are real and heavy. But so are the solutions. Better Alzheimer caregiver training. Deeper community education. Flexible workplace policies. More affordable support options. And above all — a genuine shift in how we see dementia: not as the end of a person, but as a change in how they experience the world.
At Learn2Care, we are committed to being part of that shift, through training, through awareness, and through conversations exactly like this one.
The purple ribbon this June is not just a symbol. It is a promise. Let us all work harder to keep it.
Between 30 and 70 percent of caregivers die before the person they are caring for (Family Caregiver Alliance). Self-care is not a luxury. It is what makes sustained, quality caregiving possible.
When a person with dementia acts out, resists, or becomes agitated, they are expressing an unmet need — not being difficult. Reading that signal is one of the most important skills any caregiver can develop.
Feelings are heightened. Love is felt. Connection is possible at every stage — even when names are forgotten.
Whether you are a family member, a home care professional, or an organization leader, understanding how dementia affects the brain changes how you communicate, how you care, and how you support the people around you.
Neighbors, family members, Adult Day Centers, elder law attorneys, and virtual support groups are all resources that too many caregivers never reach for.
The biggest challenges include caregiver burnout, lack of proper dementia care training, the high cost of professional care, and emotional grief. Studies show that between 30 and 70 percent of caregivers die before the person they are caring for, depending on their age group (Family Caregiver Alliance). Caregiver self-care is not optional; it is what makes sustained, quality caregiving possible.
No. While memory impairment is one of the most visible symptoms, Alzheimer’s and dementia also affect judgment, reasoning, emotional regulation, language, perception, balance, and the ability to process information. Behaviors that seem difficult or confusing are almost always expressions of an unmet need, not stubbornness or deliberate resistance.
Education is the single most powerful tool. When caregivers understand how dementia changes the brain, including why behaviors occur and how communication shifts, they are better equipped to respond with patience, reduce their own stress, and preserve their loved one’s dignity and quality of life. A proper Alzheimer’s caregiver training program is one of the most valuable investments a caregiver or organization can make.
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Dementia Caregiver Training Guide for Quality Care
Caregiver Burnout Prevention Tips and Prioritizing Self-Care
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