For most of us, Alzheimer’s and other forms of dementia exist at a distance until the day they don’t. A parent repeats the same question three times in a single conversation. A spouse becomes unsettled when familiar routines suddenly feel impossible. A grandparent calls, full of love and emotion, then calls again moments later with no recollection of the first conversation.
These moments begin as small alarms. Over time, they reshape entire families. And for organizations, they increasingly reshape the lives of employees who show up every day trying to balance caregiving with the pressures of work. It’s one of the most unspoken realities in today’s workplace, and it’s also one of the most urgent.
To better understand the hidden burden caregivers carry and what leaders must do differently, I sat down with Lisa Skinner, a certified dementia practitioner and behavior specialist who has spent more than 50 years navigating the complexities of Alzheimer’s disease. Her experience spans eight family members, decades of professional caregiving leadership, and a deep awareness of what happens inside the brain as these diseases progress. Her stories are striking, but her insights are even more important for leaders, managers, and organizations that aim to support people with compassion and clarity.
“This is such an important topic to bring to people’s attention,” she told me. She’s right, and it’s time to pay attention.
Why We Misunderstand Dementia
Most people associate Alzheimer’s with memory loss. We imagine confusion, forgetting names, losing track of details, misplacing items. But as Skinner explains, dementia isn’t just memory loss. It disrupts a person’s entire perception of reality.
“I’ve seen this play out for decades,” she said. “People witness the behaviors, but they don’t connect the dots that these behaviors are part of the disease.” Her own grandmother was diagnosed with what used to be called senile dementia, and the stories are still vivid. She described her grandmother telling her, with absolute certainty, that birds lived inside her mattress and came out at night to peck at her face. She saw rats running across the floor. She believed men were breaking into her home to steal her belongings.
As wild as those experiences sound, they are common. “People think dementia is just forgetfulness,” she said. “It’s so much more complex than that.” There are over 200 brain diseases that can produce dementia symptoms. Alzheimer’s is the most common, but it’s only one part of a much larger category of neurological decline.
What’s even more startling: most people aren’t diagnosed until they are already in the mid-stage of the disease. Early symptoms look too much like typical aging to stand out. Forgetting where you set your phone or why you walked into a room is normal. Forgetting how to operate a coffee maker you’ve used for thirty years is not. Asking about the date once in a while is common. Asking the same question repeatedly in the same conversation is a clear warning sign.
Even then, many families overlook or downplay these patterns, assuming they’re just part of aging. Meanwhile, the disease progresses quietly.
The Myths That Keep Us from Showing Up
One of the most painful misconceptions Skinner encounters is the belief that in the final stages of dementia, the person is “gone.” People often stop visiting loved ones, assuming they won’t notice or won’t care.
“That is absolutely not true,” she said. “Even when it’s not obvious to us that they’re aware, they’re still in there. They’re still a thriving person inside.” They may no longer communicate verbally. They may not recognize faces. But they respond to connection, touch, tone, presence. They feel loneliness and love. They sense being cared for or being forgotten.
This isn’t just a family issue. It’s a human issue that spills into the workplace. When employees carry the emotional weight of watching someone they love diminish, it affects their capacity, energy, and mental bandwidth. Yet leaders often miss what’s happening because caregiving is still largely invisible.
Another myth Skinner challenges is that dementia only affects older adults. While age is the biggest risk factor, Alzheimer’s is increasingly diagnosed earlier. “I once read that the youngest was thirty,” she said. “Recently, someone was diagnosed at nineteen.” These cases are rare, but the trend is concerning. Environmental factors may be contributing.
And here’s what matters for employers: dementia not only impacts older workers but also people in the prime of their careers who suddenly become caregivers at a life stage they never expected.
When Behaviors Are Communication
Skinner says the most important mindset shift caregivers can make is recognizing that behaviors are a form of communication. Hallucinations, paranoia, wandering, repetitive questions, delusions. These aren’t random or intentional. They are the brain trying to make sense of a world it no longer recognizes.
Early in her career, the prevailing clinical practice was something called reality orientation therapy. Caregivers were taught to correct false beliefs and steer people back into “the real world.” It only made things worse. “We learned that all it did was create more anxiety, frustration, and anger,” she said. “You cannot change the mind of a person living with dementia. Their reality is their truth.”
Correcting them, even kindly, often escalates fear and triggers panic. Instead, Skinner teaches families and caregivers to “join their reality.” If someone insists their spouse, who passed away years ago, is still alive, telling them the truth again is not helpful. “To them, it’s like hearing their spouse died for the first time,” she said. “It can send them into a full emotional meltdown.”
Joining their reality means acknowledging their feelings without feeding into the story. “I can see that you miss him so much. Tell me more about what you’re thinking.” It redirects without invalidating. It creates emotional safety.
The same principle applies to workplace leadership. When employees come to work in a state of worry, fear, or exhaustion, facts aren’t always what they need. They need connection, empathy, and someone willing to meet them where they are.
Preparing Families Before Crisis Hits
Most families don’t prepare early enough. They wait until cognitive decline is obvious and then scramble to figure out legal documents, long-term care decisions, and everyday logistics. By then, it’s harder for the person experiencing symptoms to articulate their preferences.
Skinner urges families to have proactive conversations long before signs of decline show up. “Ask about end-of-life wishes,” she said. “Discuss what they do or don’t want. Talk about medical decisions. Gather legal and financial documents.” Power of attorney, medical power of attorney, and advance directives become crucial. A lack of clarity often leads to family conflict because siblings interpret their parent’s wishes differently.
The same level of preparation helps caregivers emotionally as well. She encourages families to build what she calls a “toolbox” of approaches to manage different behaviors. If a loved one refuses to shower one day, there’s a reason. The reason might change the next time it happens. “What works once might not work again,” she said. “You need multiple tools.”
For workplace leaders, this insight translates into a simple truth: employees who are caregivers need flexibility and structure. They need a workplace toolbox, too.
Dementia and the Modern Workplace
We’re entering an era where more employees than ever are hiding caregiving responsibilities under the surface of their professional lives. The World Health Organization projects that the number of people with Alzheimer’s will triple by 2050. If the workforce feels strained today, imagine what will happen when millions more employees are responsible for caring for someone with dementia.
This is where leadership matters.
“The reality is that caregivers are bringing enormous stress to work,” Skinner said. “Many feel like they’re on an island all by themselves.” Caregiving isn’t a side project. It’s physically exhausting and emotionally draining. Some studies suggest caregivers experience illness at higher rates than average. Skinner has even seen situations where caregivers pass away before the person they’re caring for because the stress becomes unmanageable.
One of the biggest emerging issues is what she describes as the “sandwich generation”: employees who are raising children while also caring for aging parents. These individuals are juggling school pickups, medical appointments, emergency phone calls, and late-night worries. They may look fine at work, but internally, they’re navigating constant crisis management.
Leaders can’t solve everything, but they can remove barriers. More importantly, they can build cultures where caregiving isn’t treated as a personal inconvenience but as a shared reality.
What Great Leaders Should Do Next
Supporting caregiving employees doesn’t require massive budgets or complex programs. Instead, it requires intentional systems and human understanding. Based on my conversation with Skinner and the research around caregiver well-being, here are several starting points for organizations.
1. Normalize the conversation
Employees need to feel safe sharing what’s going on at home. They won’t speak up unless leaders create a culture where struggles are met with understanding. One sentence can change everything: “If you’re caring for someone with dementia, we want to support you.”
2. Build a resource library
Skinner recommends workplaces offer access to credible resources, including videos, articles, support groups, and guidance from professionals. These materials become an on-demand toolbox for employees who desperately need direction.
3. Encourage flexible work arrangements
Caregiving doesn’t follow a schedule. Medical appointments, crises, and behavioral episodes often come without warning. Flexibility is a lifeline, not a perk, for these employees.
4. Train managers on empathy skills
Managers don’t need clinical expertise, but they do need relational intelligence. Employees in crisis don’t need solutions first. They need acknowledgement. Leaders who learn to “join their reality” can provide the stability caregivers often lose outside of work.
5. Promote caregiver support groups
Internal groups or partnerships with community organizations give employees a place to share experiences, learn coping strategies, and feel less alone. “Support groups make a huge difference,” Skinner told me. “People realize they’re not the only ones going through this.”
6. Protect caregiver well-being
Skinner says the most important advice for caregivers is also the advice leaders should echo: “Take care of yourself.” Organizations can reinforce this through wellness benefits, mental health support, and institutional encouragement for breaks and time off.
A Future That Requires Compassionate Leadership
By the end of our conversation, it was impossible to ignore the weight of Skinner’s message. Alzheimer’s and dementia aren’t going away. If anything, we’re heading toward a future where these diseases shape families and workplaces on an unprecedented scale. Organizations that want to retain talent, support their people, and build healthy cultures need to understand this reality now.
As Skinner put it, “We’re not close to a cure. We’re not close to a treatment. And society is not prepared for what’s coming.”
But workplaces can prepare. And leaders can rise to meet this moment with empathy, flexibility, and a willingness to embrace the humanity behind the job titles. When caregivers feel seen, supported, and valued, they bring more resilience and purpose to work. That matters for performance, but it matters more for the simple reason that caregiving is one of the hardest responsibilities a person can carry, and no one should carry it alone.
Brandon Laws is a workplace culture and leadership enthusiast, host of the Transform Your Workplace podcast, and VP of Marketing and Product at Xenium HR.