Advocating at the Doctor’s Office

My mom is in the early stages of dementia but she has been accompanied by family members at doctor appointments for the past five years. The fast pace of medical appointments can overwhelm her, and she forgets many essential details afterward. Having another set of eyes and ears is crucial these days.

I've learned the hard way that not asking a question at an appointment can mean hours of phone calls, voicemails, and emails later to ask the same thing.

When you're face-to-face with the doctor or provider, that is the prime opportunity to get all the information you need. So it's best to come to appointments as prepared as possible.

Don't be shy - introduce yourself

It's important to introduce yourself to everyone. I make sure to say that I am my mom's daughter right away. I start with the receptionist, then the nurse who calls her name in the waiting room, and then later with the doctor and other professionals.

My mom usually won't introduce me because she's flustered by the bustle of the appointment. Oftentimes the nurse doesn't acknowledge me either. I'm not sure why this is the case, but I assume it's because I don't look like my mom (I'm adopted), and they aren't sure if I'm family or a helper. Or it could simply be that it's my mom's appointment, and they're busy talking directly to her.

Allow the doctor to interact with your loved one

This one is tough because it is hard for me as a caregiver not to jump in or correct. But it shows respect to my mom when she can still navigate her appointment and is the voice for her own care. The background of the provider influences this too.

Dementia-informed vs. not

Allow the doctor to interact with your loved one. In my experience, dementia-informed providers will address your loved ones directly and mainly speak to them throughout the whole appointment. This means not interrupting when my mom sugarcoats her issues or doesn't remember things correctly.

Providers who are not dementia-informed will begin talking to your loved one but might become confused or impatient, and then start addressing the family member and patient back and forth, or eventually ignore the patient completely. In these instances, I sometimes redirect the questions to my mom, so she can answer. Or I turn and make eye contact with her to include her while we're talking.

Suppose the provider likely doesn't know my mom has dementia. In that case, I bring a small business card with me that says, "My companion has memory loss and may have difficulty understanding what has been said. Thank you for your patience," and hand this to the provider or nurse. The Alzheimer's Association has similar cards for caregivers, or you can print your own.

This is another reason why dementia-specific care providers are worth their weight in gold!

Respectful ways to share your concerns and questions

By the end of the appointment, the doctor does need to know your concerns and questions as a caregiver. Doctors will not always ask you if you have questions. You might have to be assertive and make sure to interject at the end of the appointment, or the doctor will stand up and leave. It's always okay to politely ask a question or bring up a concern.

This is tricky to do without making my mom feel corrected or like a child. She deals with anosognosia, a condition where she is unaware of her deficits.

Because of this, mom gets very upset if I bring up issues related to her disease because she is completely healthy in her eyes. I've found two ways of addressing my questions that don't embarrass my mom.

Redirecting collaboratively

Sometimes I do this by asking my mom a question: "Mom, didn't you also want to ask the doctor about the foot pain you've been having?"

Or I will address the doctor directly. "We've been a little concerned about my mom's balance," or "What do you think about mom participating in clinical trials?"

One question I had to ask was, "Could I ask what type of dementia you think it is?" I was nervous to ask, but it was an easy answer that helped me stop worrying. Mom’s neurologist was reluctant to give her a diagnosis throughout multiple appointments, but when I asked, she said decisively, "It is likely Alzheimer's dementia."

If it's hard to ask, write it down

If there's anything more embarrassing to mom or hard to ask out loud, I write it down. I bring a one-page, typed list of questions and concerns to share with the healthcare team. It's important to keep it short and specific to respect the provider's time. Make sure to focus on what's most important so your biggest concerns aren't lost, among other things.

I usually hand this paper to the nurse when we are first called back, and my mom is busy getting weighed or her blood pressure taken. Then the nurse can read it over and also give it to the doctor, so they have a chance to read it before coming into the room.

My mom does not notice any of this, but if your loved one does, you can find another way, like sending an email beforehand. This approach is helpful because it protects my mom from getting upset about problems she hasn't noticed.

Advocating for your loved one is important

Every person with dementia is unique and lives with different symptoms and health issues. Providers are trying to care for your loved ones but also have many layers of their job which require their attention elsewhere.

Doctors may not remember things from previous appointments if it wasn't added to the medical chart, or they might not remember that your loved one is taking certain medication before they prescribe a new one.

They can't read your mind, and they also will have a very hard time reading your loved one's mind if they are living with dementia. Bring up the things that are important to you and your loved one, and if they're brushed aside - bring them up again.

Don't be afraid to advocate for your loved one. It might mean being a little more persistent or probing than you're used to, but it's well worth it for better care for your person with dementia.

How do you advocate for your loved one living with Alzheimer's? Tell us about your experience in the comments below, or share your story with the community.