One in Five Employees Is a Dementia Caregiver—Whether You Know It or Not
- Feb 3
- 3 min read
One in five employees is caring for a loved one with dementia.
Most employers are surprised by this number. Many of these employees do not identify as caregivers, because dementia caregiving often begins years before a formal diagnosis.
That does not mean they are not caregiving.
Caregiving Starts Long Before a Diagnosis
When people think of dementia caregiving, they often picture advanced illness: memory care placement, hospice involvement, or hands-on personal care.
The reality is very different.
Most dementia caregivers spend years responding to changes without a name for what is happening. During this time, employees may be quietly managing:
Financial disruptions from missed bills, poor judgment, or fraud
Emotional strain caused by personality changes, anger, or withdrawal
Psychiatric symptoms such as anxiety, paranoia, or agitation
Physical safety concerns including falls, wandering, or medication errors
They are caregiving—even without a diagnosis.
And most are doing it unprepared.
Dementia Caregiving Is Not Intuitive
Dementia caregiving is fundamentally different from parenting, short-term medical caregiving, or supporting a loved one through a temporary illness.
As dementia progresses, the brain’s ability to reason, plan, and adapt changes.
Strategies that once worked—explaining, correcting, persuading—stop working entirely.
Employees often respond by trying harder: offering more explanations, correcting mistakes, staying up later, missing meetings, or leaving work early to manage crises at home. Without understanding the disease process, these efforts frequently increase stress rather than reduce it.
Dementia Caregiving in the Workplace Often Goes Unrecognized
Dementia caregiving in the workplace often remains invisible until productivity declines, absences increase, or a crisis forces attention.
From an employer’s perspective, dementia caregiving rarely presents as a clear request for support.
Instead, it shows up as:
Declining concentration or productivity
Increased absenteeism or last-minute schedule changes
Emotional exhaustion, irritability, or disengagement
Previously high-performing employees beginning to struggle
Requests for reduced hours, extended leave, or sudden resignation
By the time a crisis occurs—hospitalization, emergency placement, or caregiver burnout—the cost to both the employee and the organization is already high.
Why Traditional Benefits Often Miss the Mark
Many organizations offer valuable supports such as Employee Assistance Programs, caregiver hotlines, or wellness resources.
However, these resources often assume employees understand what they are dealing with.
Dementia caregivers frequently do not.
What they need first is help understanding:
What changes they are seeing
Where their loved one may be in the dementia journey
What to expect next
How to respond effectively while preserving dignity and stability
Without this foundational understanding, support services are underutilized or accessed too late to prevent crisis.
Education Changes Outcomes
When caregivers understand dementia, meaningful shifts occur:
Problems are addressed earlier
Crises become less frequent
Decision-making improves
Stress decreases
Employees remain engaged and productive longer
Education does not replace emotional support—it makes support usable.
A Workforce Reality Employers Can Address
Dementia caregiving is not a niche issue. It is a growing and persistent workforce reality.
Employers who recognize this early have an opportunity to:
Retain experienced, valuable employees
Reduce unplanned absences and crisis-driven leave
Support managers with clearer expectations
Demonstrate a meaningful commitment to employee well-being
Supporting dementia caregivers is not about doing more—it is about providing the right support at the right time.
What Employers Can Do Next
Dementia caregiving is already affecting your workforce—often quietly and long before anyone names it.
Early education helps employees understand what they are seeing, respond more effectively, and seek support before crisis occurs.
Employer-provided dementia education is one way organizations can support caregiving employees earlier, reduce disruption, and retain experienced staff.
Learn more about employer and organization-based dementia education at BetterDementia.com/organizations.
—
Amy Shaw, PA
Founder, Better Dementia™
