In advance of our Dementia/Alzheimer's series that begins next week, we wanted to share a first-person account from Sue Ryan – who draws on more than four decades of lived experience caring for family members with Alzheimer’s disease and other dementias.
Most families expect dementia to announce itself with obvious memory loss. That’s rarely how it happens.
Instead, the earliest signs often slip in sideways — a small change in judgment, a break in routine, a reaction that feels off but easy to excuse. Fatigue. Stress. “Just getting older.”
In her narrative, Sue describes the subtle behavioral shifts she’s learned not to ignore — the kinds of changes families often rationalize away until, in hindsight, they realize something fundamental was already changing.
This isn’t a checklist or a diagnostic guide. It’s a caregiver’s perspective — grounded in real moments, patterns, and instincts — written for adult children and spouses who may already feel that quiet knot of worry in their stomach and aren’t sure what to trust yet.
What follows is Sue Ryan’s story, in her own words.
What behavioral changes often appear first
By Sue Ryan, Co-founder of The Caregiver’s Journey
In my 40 years caring for family members with Alzheimer’s disease and other types of dementia, and now co-founder of the nonprofit The Caregiver’s Journey®, I've learned the earliest behavioral changes are often the ones we rationalize away.
We tell ourselves 'Mom's just tired.' or “Dad's just getting older.' when actually it’s something fundamental that’s shifting.
Subtle changes
The changes I noticed first weren't dramatic memory losses — they were subtle changes in judgment and behavior.
My husband, in roles as a CPA and then a CFO for his entire career, previously meticulous about accounting details, began making uncharacteristic financial mistakes.
My grandmother, an incredibly skilled cook, began burning meals repeatedly and leaving out ingredients from recipes she’d been making since before I was born.
My dad, a man of habit my entire life, began resisting habits he’d had since I was a child.
One of these was breakfast.
Every morning – a glass of orange juice with his vitamins, a bowl of oatmeal with brown sugar on it, and a slice of Sara Lee coffee cake.
One day he didn’t want it.
We encouraged him and he became angry — also not like my dad.
This continued for several days until we stopped making him his routine breakfast.
He did not go back to wanting either the oatmeal or the same thing every day.
Repetitive patterns
Pay attention to repetition patterns such as telling the same story multiple times in a single conversation, asking the same question within minutes, or losing the thread mid-sentence more frequently.
Watch for social withdrawal — suddenly declining invitations they'd normally accept, or seeming confused in previously comfortable social situations.
Here’s what I learned:
Normal aging can look like occasionally repeating a story to the same person periodically over weeks or months.
Cognitive decline shows repetition within minutes or hours, and the important distinction is they have no awareness of the repetition — even when gently reminded.
Compensating behaviors
One of the most telling signs is what I call “compensating behaviors.”
Some of these include making extensive lists for simple tasks they used to do automatically, relying heavily on a spouse to answer questions they'd normally handle themselves, and/or becoming defensive or anxious when their memory is questioned.
On the other side, it’s the spouse who initiates compensating behaviors.
They begin making extensive lists for their loved one to make it “easier” for them.
They frequently interject a word to prompt them, finish sentences, or guide a conversation that helps their loved one.
They also become defensive when someone questions them about their loved one’s memory.
Important insight
Trust your instincts.
You're not looking for isolated incidents. Everyone has off days.
You're watching for patterns of change from their personal baseline.
When someone's normal personality, judgment, and/or daily functioning shifts in ways that feel “not like them,” trust your instincts.
Start quietly documenting specific incidents with dates and details.
This record will be incredibly valuable as you gather information to support your instincts.
When you finally talk with doctors, this helps you distinguish between normal aging and genuine cognitive decline.
If you are perhaps an adult child or spouse noticing these changes and feeling that knot of worry in your stomach, please know you're not overreacting, and you're not alone.
The fact that you're educating yourself right now means you're already doing something profoundly important.
You're preparing to advocate and care for your loved one with knowledge and compassion.
Your loved one is fortunate to have someone who cares enough to learn and prepare.
Please know this as well: you’re not alone; we’re all on this journey together.
ABOUT SUE RYAN, ACC, CCA™
Sue Ryan is co-founder of The Caregiver’s Journey®, a 501(c)(3) nonprofit and a resource grounded in practical resources to empower dementia caregivers to easily tackle day-to-day challenges with confidence, patience and peace of mind.
She is also co-host of the award-winning The Caregiver’s Journey podcast. A sample of one of their episodes is below.
