I worked as a clinical psychologist in a hospital for 13 years. I’ve also been a family caregiver, on the other end of those appointments.
From both sides, here are three things I wish more doctors and health care providers understood about dementia caregiving.
1. Credentials Don’t Make You the Only Expert
Just because the doctor or health care provider is the one with the credentials, the degrees after their name, doesn’t mean they know everything and have all the answers.
It’s easy for health care professionals to assume they know what’s best for your loved one. After all, they have the training. They have the years of clinical experience and the hours of working in the field.
But the truth is, you are the expert on your loved one. You have a lot more knowledge, information and understanding about your loved one than any provider.
That’s why treatment recommendations and discussions should never feel one-sided, like the health care professional is the one calling all the shots. The family should always be included in the discussion, and so should the person with dementia, to the extent they’re able. What you’re witnessing and seeing at home should be taken into account.
In short, the health care provider might know more about dementia than you. Maybe. But you know more about your loved one with dementia than they do, and that matters.
Now, obviously, Careblazer, you do have to be talking to your loved one’s health care providers. Nothing I share is a replacement for health care. I just wish more providers had a little more empathy, understanding and maybe humility, and realized that the family member sitting in front of them has a lot to offer to the clinical picture. It doesn’t need to be one-sided.
If your loved one seems perfectly fine the moment the doctor walks in, I explain why that happens in 5 more strange dementia behaviors.
And if family members say they seem fine after a short visit, I go through why someone with dementia can seem fine in a short visit.
2. Family Caregivers Are More Than Just Caregivers
I have been guilty of this one myself, when I was a provider.
It’s easy to overlook the fact that the family member at the appointment is somebody with a life outside of caregiving. Or at least somebody who would love a life outside of caregiving.
So don’t assume they have nothing else to do but care for their loved one. Many caregivers:
- still work
- volunteer
- have their own health needs to attend to
- are raising kids
- have hobbies and friendships
- keep up the house: the chores, the grocery shopping, the cooking, everything
So when a provider gives you a complicated medication regimen to follow, or tells you about the six follow-up appointments your loved one needs to attend, it might be a good idea for them to check in on how you’re doing. To acknowledge everything you’re doing. To let you know you’re doing a great job.
Careblazers are real human beings with lives outside of caregiving. You are not a robot designed to build your entire life around dementia caregiving… even though that’s exactly what it feels like.
If caregiving has taken up so much of your life that you hardly recognize yourself, I talk about that in why dementia caregivers lose their sense of self.
3. Speak Plainly: Medical Jargon Confuses Families
Do not treat family members or the person with dementia as if they are dumb. But you do need to explain things.
Most Careblazers, and most people with dementia, didn’t grow up in the health care setting. Nobody automatically knows what all those acronyms, abbreviations and terms mean.
I remember when my dad was in the hospital. A provider came into the room to talk about his discharge plan and what would happen next. She used what felt like at least a dozen abbreviations and terms that aren’t common in the real world unless you’ve been caregiving for a while.
She told him he’d need to go to a SNF. That he would go to rehab. That after that, he would likely go to assisted living.
If you’ve been caregiving for a while, or you work in health care, SNF, rehab and assisted living might all seem to make total sense. But not to most people. There’s so much misunderstanding behind those words.
My dad had no idea what a SNF (a skilled nursing facility) was. If I didn’t come from the health care system, at that stage of my caregiving I wouldn’t have known either.
Rehab? My dad had a big alcohol problem. Were they talking about rehab for his alcohol use, or rehab for his muscles?
Assisted living? What does that mean? Does he have to be there forever? What kind of assistance does he get? What does that look like?
Of course, my dad said he understood everything. He just wanted the provider out of the room. But as soon as she left, he said, “What in the world was that lady talking about? I didn’t understand anything she said.”
Fortunately, I was able to help him and explain some things. But it made me realize how many family members and people with dementia don’t understand these things. And it feels like health care providers are in such a rush that we almost don’t want to ask them to slow down and take the time to explain.
I wish health care providers did more describing, instead of just naming things.
Help Choosing a Medicare Plan
In the video this post comes from, I also shared some important news if you or a loved one are on Medicare.
In May 2025, the Department of Justice filed a False Claims Act complaint against three national health insurance companies and three large Medicare broker organizations. According to the Department of Justice, the brokers claimed to offer seniors unbiased help choosing a plan while steering them into the plans that paid the brokers the most in kickbacks. So the plan wasn’t necessarily the best one for the senior. It was the most profitable one for the broker. The Department of Justice notes that these claims are allegations only.
I go through more ways to protect your loved one from companies that don’t have their best interest in mind in how to protect your loved one with dementia from scams.
Deciding on the best Medicare plan for your needs is extremely important, but it can be so overwhelming. There’s so much information, and so many plans to look at. So it’s infuriating to hear that the companies dedicated to helping seniors choose might not always be upfront about what they’re doing.
That’s why I wholeheartedly recommend Chapter. Chapter was founded because the co-owner’s parents were scammed, and they vowed to fix the system. Chapter is fully independent, and they search every Medicare plan available to find the one that actually fits your needs. They advocate for you, not the insurance company, so they’re not steering you in any direction for their own profit. There’s no pressure. It’s ethical, honest help at no cost to you.
You’ll talk to a real person who will help you figure out exactly which plan is right for you. Visit askchapter.org/careblazers or call Chapter at 504-490-0080 for free, personalized guidance to make sure you’re on the right plan this year. Chapter sponsored the video this post comes from.
*Chapter: Chapter and its affiliates are not connected with or endorsed by any government entity or the federal Medicare program. Chapter Advisory, LLC represents Medicare Advantage HMO, PPO, and PFFS organizations and stand alone prescription drug plans that have a Medicare contract. Enrollment depends on the plan’s contract renewal. While we have a database of every Medicare plan nationwide and can help you to search among all plans, we have contracts with many but not all plans. As a result, we do not offer every plan available in your area. Currently we represent 50 organizations which offer 18,160 products nationwide. We search and recommend all plans, even those we don’t directly offer. You can contact a licensed Chapter agent to find out the number of products available in your specific area. Please contact Medicare.gov, 1-800-Medicare, or your local State Health Insurance Program (SHIP) to get information on all of your options.
*Average potential savings are based on realized premium, co-pay, and out of pocket savings estimates self-reported by consumers that worked with Chapter Advisory LLC to enroll in a Medicare Supplement, Medicare Advantage, and/or Part D Prescription Drug Plan. The average is limited to consumers that chose to self-report. Savings information is subject to periodic updates and corrections. There is no guarantee of savings and any savings may vary by policy type, state, or other factors.
When Providers and Families Work as a Team
I think if more health care providers understood and followed these three things, there would be a lot less misunderstanding, a lot less frustration, and probably a lot fewer lawsuits. Just from feeling like we’re a team together. From really valuing what the family member is saying, knowing that providers don’t always have all the answers, and that the family member has a lot to contribute.
When appointments leave you with more questions than answers, it helps to have somewhere to bring them. Inside the Care Collective, we talk through moments like these every week: what you’re seeing at home, what to ask your loved one’s providers, and how to take care of yourself with everything else on your plate. You can learn more here.
