Dr. Natali Edmonds, a board-certified geropsychologist and founder of Dementia Careblazers, explains what families often misunderstand about caring for someone with dementia.
What do you think people misunderstand most about dementia before they experience it firsthand?
Most people expect someone with dementia to seem confused or have obvious memory problems, but dementia doesn’t always work that way. It doesn’t even always impact memory. Some people live with dementia for years before anyone around them notices something is wrong. In earlier stages, there may be no obvious outward signs at all. Sometimes a person seems completely fine, then struggles with something simple the next day. It’s not always a clear or steady decline. This inconsistency is deeply confusing for families and can leave them wondering whether their loved one truly has dementia in the first place. I like to say that people with dementia are more different than they are the same. How it looks, what difficulties arise, and how long it lasts vary enormously from person to person.
What behavior do caregivers misunderstand the most, and what’s actually happening beneath it?
Sometimes caregivers provide enormous support behind the scenes. They help with daily tasks, manage irritability, and fill in the gaps of their loved one’s memory. Then a visitor arrives or a doctor’s appointment happens, and the person with dementia seems completely fine, almost like nothing is wrong. This leaves caregivers feeling confused, doubted, and sometimes dismissed as exaggerating about the problems they are seeing.
This is sometimes called showtiming. When faced with a new person or setting, the brain draws on long-practiced social scripts that are often preserved longer than other cognitive functions. This means everyone else gets the best version of their loved one while the caregiver sees the worst. The important thing to remember is that it’s not personal and it’s not about anything the caregiver is doing wrong. Whoever spends the most time with a person with dementia will naturally witness the most struggle. That’s not a burden. It’s a sign of how present they are.
What are caregivers overcomplicating that could actually be much simpler in dementia care?
One thing caregivers overcomplicate is decision-making. Dementia care is full of hard decisions: when to take away the car keys, when to tell family and friends, when to bring more help into the home. There are pros and cons to every option, and not everyone will agree with your choices.
However, endlessly seeking reassurance or comparing yourself to others can keep you stuck. It’s important for caregivers to remember that they are making the best decision they can with the information they have at the time. If things don’t turn out the way they hoped, that doesn’t mean they made the wrong decision. Our brains trick us into thinking the other choice would have been better, but since we didn’t make that choice, we don’t actually know that. It’s just as likely it could have been worse. Be your own best friend through this process.
In your experience, what’s the biggest mindset shift that helps caregivers feel more confident in difficult moments?
Trying to keep a person with dementia happy all the time can actually be dangerous. Many people with dementia have a condition called anosognosia. It looks like denial, but it’s actually a neurological condition that prevents a person from understanding their own limitations. For example, they may believe they can still drive safely or manage their finances, even when they can’t.
If the goal is to keep a person with dementia happy at all times, caregivers would end up saying yes even when it’s unsafe or puts their loved one at risk. Sometimes that means they may see us as the problem or as the person stopping them from doing what they want. Giving the best possible care doesn’t always feel good. This mindset shift can help caregivers stop second-guessing themselves and start trusting themselves more.
What does good dementia care look like to you beyond just managing symptoms?
What good care looks like can change day to day. Many caregiving tips ignore the fact that caregivers are human beings juggling more than caregiving: work, errands, appointments, housekeeping, and often doing all of it on broken sleep because their loved one was up through the night.
Good dementia care sometimes looks like a nutritious home-cooked meal. Sometimes it looks like a bowl of cereal. Sometimes it looks like getting them into clean pajamas after a long struggle. Sometimes it looks like letting them sleep in their clothes because they didn’t want to change. It’s easy to judge from the outside when you haven’t lived it. Good care isn’t about perfection. It’s about preserving dignity, maintaining connection, and showing up consistently for another human being under incredibly difficult circumstances.
Where do you see the biggest disconnect between what caregivers think they should be doing and what actually helps?
It’s easy to think that the person with dementia needs to understand what we understand in order for them to cooperate or agree to something. They don’t. Rather than focusing on their understanding, focus on the outcome you want.
If a person with dementia insists on going home, explaining that they are already home rarely works, but helping them pack a bag, taking a little break, and changing the subject might. If someone needs supervision in the home, trying to explain safety concerns usually doesn’t work, but saying a friend is stopping by to visit might work beautifully.
There are endless ways to approach any situation in dementia care. The most successful ones focus on the outcome you want rather than getting your loved one to understand what you understand. That requires spending less time trying to get them to understand our reality and more time trying to enter theirs.
