Stuff Every Dementia Caregiver Should Know
Real Answers to the Questions Nobody Knew They Needed to Ask
by Deb Jeffrey
Nobody hands you a manual when someone you love develops dementia.
One day you’re living your normal life. The next, you’re trying to figure out why she asks the same question every two minutes, why explaining something only makes him angrier, whether it’s still safe for her to be alone — and how you’re supposed to know what to do next.
Stuff Every Dementia Caregiver Should Know gives you practical, plain-language answers to 161 of the questions dementia caregivers find themselves asking along the way.
You don’t have to read it cover to cover.
Just start with the Stuff you’re dealing with today.
Wait…Why Is He DOING That?!
Dementia has a way of creating questions you never knew you were going to need answers to.
Why does she keep asking the same thing?
Why doesn’t explaining work anymore?
Why is he accusing me of something that never happened?
Why won’t she take a shower?
Can I still leave him home alone?
Is this dementia — or is something medically wrong?
When do I need more help?
How do I know when it’s time for hospice?
And somewhere in the middle of taking care of everyone and everything else:
Why am I falling apart?
That’s why I wrote Stuff Every Dementia Caregiver Should Know.
Not as a textbook.
Not as a book you have to sit down and read from beginning to end.
But as the book I wish someone had handed me when dementia first entered our lives and I realized just how many things I didn’t know I needed to know.
There are 161 short questions and answers, covering everything from those first “Is this dementia?” moments through communication, behaviors, safety, getting help, caregiver exhaustion, advanced dementia, hospice and dying.
Find the question that’s keeping you awake today.
Start there.
A Peek Inside Stuff Every Dementia Caregiver Should Know
161 questions. Short answers. Plain language. No dementia dictionary required.
Why does he keep asking me the same thing or telling me the same story?
Because to him, it may not be a repeat. If the brain isn’t successfully storing the answer, asking “What time are we leaving?” doesn’t create a lasting memory.
You answer.
The information disappears. A few minutes later, the question returns.
From your perspective, this is Question Number Seventeen.
From his perspective, it may be Question Number One.
Why doesn’t explaining work anymore?
Because dementia can affect the very abilities someone needs in order to follow your explanation.
This is one of the hardest adjustments for caregivers, especially if talking things through has always been how you solved problems together.
You explain what happened, give the reasons, clear up the misunderstanding and move on.
Except now you explain. He doesn’t understand. So naturally, you explain better. More details. Different words. Maybe a little louder, because apparently volume will repair the damaged brain. It usually doesn’t…
How do I know when I can’t leave her alone anymore?
This question is less about the stage of dementia and more about what could happen while you’re gone.
Can she respond appropriately if there’s a fire alarm?
Can she use the phone to get help?
Will she remember that the stove is on?
Could she leave the house looking for you?
Does she recognize strangers?
Can she manage the bathroom safely?
Will she take medication again because she forgot she already took it?
If something unexpected happens, can she figure out what to do?
What Kind of “Stuff” Are We Talking About?
Because dementia doesn’t stay neatly in one category.
This book can help you make sense of:
- Memory & Thinking – Repetition, confusion, memory loss and changes in reasoning.
- Communication – Why explaining, correcting, arguing and asking questions may suddenly stop working.
- When Reality Changes – Hallucinations, delusions, paranoia, Capgras syndrome and other changes in perception.
- The “Why Is He DOING That?!” Stuff – Unexpected behaviors that can leave caregivers baffled, frustrated or frightened.
- Everyday Life – Bathing, dressing, eating, toileting and all the things that used to be simple.
- Safety – Driving, wandering, medications, falls, being home alone and knowing when to step in.
- Medical Questions – When a sudden change may be dementia — and when it may be something else.
- Getting Help – Doctors, medications, respite, in-home care, memory care and finding more support.
- The Caregiver – Exhaustion, guilt, grief, anger, isolation and the relentless mental load.
- Advanced Dementia & End of Life – Hospice, dying and some of the hardest questions families eventually face.
You don’t need all 161 answers today.
You just need the one that helps with what’s happening right now.
Who Is This Book For?
This book is for the person who just heard the word dementia and has no idea what happens next.
It’s for the caregiver who’s been doing this for months or years and suddenly encounters something completely new.
It’s for the person caring for someone living with Alzheimer’s disease, Lewy body dementia, vascular dementia, frontotemporal dementia or another form of dementia. It’s a practical dementia caregiver guide for family members trying to understand what’s happening, what may help and when to get more support.
It’s for the caregiver who keeps Googling questions at 2:00 in the morning.
The one wondering:
Is this normal?
Is this dementia?
Should I be worried?
What am I supposed to do?
Can somebody please just tell me what might help?
You don’t have to know what stage you’re in.
You don’t have to know the medical terminology.
And you definitely don’t have to know which question you’re going to need next.
That’s why there are 161 of them.
This Isn’t a Sit-on-the-Shelf Book
Open it.
Dog-ear it.
Highlight it.
Write in the margins.
Stick Post-it notes all over it.
Leave it on the nightstand.
Toss it in the bag you take to appointments.
Hand it to the family member who keeps saying,
“Have you tried explaining it to him?”
Start at Question #1.
Start at Question #87.
Or open the table of contents after dementia does something completely unexpected and find the question that sounds suspiciously like what just happened in your house.
This book was made to be used.
You don’t need to figure out the whole dementia journey today.
Sometimes you just need someone to help you understand the thing that happened today.
About Deb Jeffrey
Deb Jeffrey is a writer, illustrator and dementia caregiver — and the creator of Living With Lewy, where she shares hope, help and humor from inside the often unpredictable world of dementia caregiving.
Stuff Every Dementia Caregiver Should Know grew out of years of caregiving, researching, asking questions and repeatedly finding herself thinking:
Wait…why is he DOING that?!
Deb has cared for and loved people living with different forms and stages of dementia, and she writes from the intersection of lived experience and what she’s learned along the way.
Her goal isn’t to turn caregivers into dementia experts.
It’s to help them understand what may be happening, what may help, and when something deserves a closer look — without making an already overwhelming job even more overwhelming.