Compassionate Care: How to Advocate for Your Loved One at Doctor’s Appointments
When you’re caring for a loved one with dementia, medical appointments can feel overwhelming—for both of you. You may be juggling paperwork, trying to remember symptoms, asking questions, and interpreting answers, all while comforting someone who may feel confused or anxious in a clinical setting.
In many ways, you become their voice. Their historian. Their buffer. Their translator.
Advocating for your loved one at medical appointments isn’t just helpful—it’s essential. Doctors often have limited time, and dementia can make it difficult for patients to communicate clearly or accurately. Your presence helps ensure your loved one receives thoughtful, appropriate care based on their real needs.
In this post, we’ll walk through what it means to be an effective advocate, how to prepare, what to say (and ask), and how to follow up afterward. The goal is to help you feel more confident walking into each appointment and more informed walking out.
🧭 What Does “Advocating” Mean in This Context?
To advocate means to stand in for someone when they can’t fully speak for themselves—or when their needs might otherwise be overlooked. In a medical setting, that includes:
- Ensuring the doctor understands your loved one’s current symptoms and history
- Asking important questions and writing down the answers
- Helping your loved one feel safe and heard
- Speaking up if something doesn’t feel right
You don’t need to have all the answers. You just need to speak from a place of care and clarity.
📝 Step 1: Preparing Before the Appointment
Good advocacy starts before you enter the exam room.
✅ Create a Simple Symptom Summary
Write down recent changes in:
- Memory or behavior
- Sleep or mood
- Appetite or weight
- Mobility or coordination
- Medication effects or side effects
Tip: Use bullet points and bring two copies—one for you and one for the doctor.
✅ Bring a List of Medications
Include:
- Prescription drugs
- Over-the-counter meds
- Supplements or herbal remedies
Why it matters: Some medications can interact or worsen dementia symptoms. The doctor needs to know everything your loved one is taking.
✅ Prepare a Few Clear Questions
Examples:
- “Are there ways to manage this confusion/agitation?”
- “Could this change in behavior be related to a medical issue, like an infection?”
- “Is it time to adjust any medications or doses?”
- “Are there new resources or support services we should know about?”
Try to prioritize your top 2–3 concerns so they don’t get lost in a rushed visit.
💬 Step 2: Communicating During the Appointment
👂 Be a Calm Observer and Active Participant
Let your loved one speak for themselves when they can—but fill in gaps gently and respectfully when needed.
Say things like:
- “She’s been having more trouble remembering names lately.”
- “He told me he’s been feeling nervous in the afternoons, which is new.”
- “I’ve noticed he’s not sleeping through the night anymore.”
If your loved one says something that’s not accurate, avoid correcting them in a way that might embarrass or confuse them.
Instead, wait and clarify privately with the doctor if needed, or use gentle wording:
“She may not remember, but we had to help her with bathing three times last week, which hasn’t been the case before.”
👀 Pay Attention to the Doctor’s Communication Style
Is the doctor speaking clearly and respectfully to your loved one? Are they rushing through explanations or using complicated language?
Don’t hesitate to ask:
“Could you explain that in simpler terms?”
“Can you repeat that so I can write it down?”
“Is there a handout or link you recommend so we can review this at home?”
📋 Step 3: Clarify Next Steps Before You Leave
Before leaving the appointment, make sure you clearly understand:
- Any medication changes (and why they’re being made)
- Warning signs to watch for
- Next steps (labs, referrals, follow-ups)
- Whether it’s time to consider outside services, like physical therapy, occupational therapy, or memory care planning
Write down these items or ask the nurse to summarize them in a visit summary.
🔄 Step 4: Following Up After the Appointment
After the appointment:
- Share key updates with other family members or caregivers
- Place new instructions in a visible spot (e.g., fridge, calendar, medication chart)
- Track any changes in symptoms to bring up at the next visit
- Reach out if new problems arise—don’t wait for the next scheduled appointment if something urgent happens
Bonus Tip:
If possible, establish a primary point of contact in the doctor’s office—often a nurse or care coordinator. They can help you get answers quickly and schedule follow-ups with less hassle.
🧠 What If the Doctor Isn’t Listening?
Sadly, some caregivers run into doctors who minimize dementia symptoms or speak over the patient—or the caregiver. If you feel dismissed:
- Stay calm, but firmly restate your concerns.
“I understand the test results look fine, but I’m seeing real changes in her behavior at home.”
- Ask for a referral to a neurologist, geriatrician, or memory care clinic.
“Would it be possible to get a second opinion or a more specialized evaluation?”
- Bring a written record of concerns next time, especially if you tend to get brushed off in person.
If you consistently feel unheard, it may be time to consider switching providers. Your loved one deserves care from someone who takes the time to understand their whole picture.
💙 Final Thoughts: You Are Their Voice
Advocating at medical appointments may not always be easy—but it’s one of the most important things you can do. Your voice bridges the gap between what your loved one is experiencing and what the doctor sees in a short visit.
You are not just the person who drives them to appointments. You are the witness to their reality. You are the steady hand. You are the one who helps connect the dots.
At Compassionate Care, we honor the quiet power of that role. Every time you speak up, ask a question, or take notes—you are protecting your loved one. And that matters deeply.
