Why Dementia Caregiving Is So Hard (And Why the Medical System Often Misses It)
- Jan 23
- 4 min read
So… real life update. I got married this week.
This is one of those moments where real life and professional life collide.
As a small business owner, I get my health insurance through the marketplace at healthcare.gov. The marketplace does not control costs—insurance companies do. Last year, I received a federal subsidy that made my insurance more affordable. This year, that subsidy went away. At the same time, insurance costs in Wyoming went up another 25 percent.
My monthly premium went from $603 a month for just me to $1,450 a month.
So my boyfriend and I decided to get hitched.
We had a lovely, simple ceremony surrounded by family, friends, and colleagues in a judge’s chambers. Wyoming is a small town, and it is easy to do these kinds of things here.
I am sharing this not because it is romantic, but because it is real. And because it is a reminder of something medicine often forgets.
The Iceberg of Real Life in Dementia Care
As a medical provider, this was a healthy reminder to think about the unseen mass of ice under the waterline—the iceberg of real life.
In medicine, we tend to focus on the small portion above the surface: symptoms, diagnoses, and treatment plans. But real life happens below the waterline. In the bills. In the logistics. In the exhaustion. In the stress at home.
This is especially true for families caring for someone with dementia.
Dementia does not just affect memory. It affects everything: relationships, finances, routines, communication, safety, and decision-making. And most of that unfolds quietly at home, long before it shows up clearly in a medical chart.
Why Dementia Caregiving Is So Hard for Families
One of the hardest parts of dementia caregiving is that families are often navigating an incredibly complex disease without a shared framework or language.
This is often the moment when families begin to ask themselves why dementia caregiving is so hard, even though they are doing everything they can to support their loved one.
Caregivers are managing:
Progressive cognitive and functional losses
Behavioral and personality changes
Increasing supervision and responsibility
Emotional grief that starts long before death
Practical challenges like work, finances, and healthcare access
All while being told, too often, that “this is just normal aging” or that nothing can be done yet.
Families are doing advanced-level care in real time, without preparation.
What Is the Hardest Part of Dementia Care?
The hardest part of dementia care is that the rules keep changing.
What works today may not work next month. Skills that were intact yesterday may be gone tomorrow. Reasoning stops working. Explanations fail. Independence quietly erodes.
Caregivers are forced to adapt over and over again, often without understanding why what they are doing is no longer effective.
This is not a failure of effort or love. It is the nature of a progressive brain disease.
Why Dementia Is So Often Missed in Medical Care
The medical system is built on the assumption that patients can recognize, remember, and accurately report their symptoms.
Dementia removes that foundation.
When self-report and intact cognition are no longer reliable, care must shift to pattern recognition, longitudinal observation, and family partnership. Unfortunately, our system is not designed to do this well.
Short visits, fragmented care, and overreliance on patient self-report mean that dementia is often recognized late—after families have already been struggling for years.
Diagnosis usually begins at home, not in a clinic.
How Families Actually Learn to Deal With Dementia at Home
Families are the first to notice when something is wrong.
They see the missed bills, the repeated stories, the confusion, the personality shifts, the difficulty with everyday household tasks. They notice patterns long before those patterns meet diagnostic thresholds.
What families need is not just reassurance or advice. They need:
A way to understand the entire dementia journey
Language for what they are seeing
Guidance that evolves as the disease progresses
Strategies that align with the losses at each stage
Understanding where your loved one is in the dementia journey changes everything.
Why Education Changes the Dementia Caregiving Experience
Every caregiver I have ever met is driven by the same goal: to preserve their loved one’s dignity and well-being.
Dementia is challenging, but it does not have to be all doom and gloom.
Families who are well prepared are empowered to:
Anticipate changes instead of reacting in crisis
Adjust communication as cognition changes
Make care decisions earlier and with more confidence
Reduce unnecessary suffering for everyone involved
That is why I created a comprehensive, clinically grounded, self-paced online course for caregivers of loved ones with dementia.
It is everything I teach families I work with, delivered up front: the full dementia journey, how the disease progresses, how to recognize the stages at home, and practical strategies for communication and support that align with each stage of loss.
If you are struggling at home—or worried about changes you are seeing in a parent, partner, child, or friend—this course is built for you.
To learn more, visit betterdementia.com/course
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Amy Shaw, PA
Founder, Better Dementia™
