Linus Health - Resources Blog

Advocating for yourself in healthcare

Written by Admin | Sep 29, 2026, 2:35:10 PM

Medical appointments can feel rushed, and sometimes overwhelming, especially when your concern is about memory or thinking changes. Whether you have concerns about your own brain health, or are supporting someone who does, effective self-advocacy helps ensure concerns are heard and questions are answered. You do not need to know exactly what is causing the changes before speaking to a healthcare professional. The goal is to start a conversation and work together to understand what is happening and what to do next. .

The care team will typically include the person with memory concerns, their family member or care partner, and the clinical team. Everyone can bring valuable information to the conversation, and the person experiencing the changes should have a space to share their perspective whenever possible.

Why self-advocacy matters

Brain health concerns often bring subtle, but meaningful changes in memory, attention, thinking, and communication. Because appointments may be brief, it’s easy for important details to be missed.

Self-advocacy helps you:

  • Describe changes clearly
  • Ask informed questions
  • Participate in decisions about treatment and lifestyle
  • Build a stronger, more collaborative relationship with your healthcare provider and clinical team
  • Understand what happens next and when and where to seek further help

Advocacy is about being prepared, clear, and engaged.

Before the appointment: Set yourself up for success

Good advocacy starts before you walk into your doctor’s office. These tips can help you feel more comfortable and confident during the appointment.

1. Write down key concerns

A short written list helps keep things on track. Work with your family, or those who know you well, to include:

  • New or worsening symptoms
  • When you first noticed them and whether they have changed over time
  • Anything that seems to make them better or worse
  • What you hope to get from the appointment
  • Specific examples (e.g., “forgot two appointments last week”)
  • Questions about medication and side effects
  • Any safety concerns (e.g., driving, falls, missed doses)

Tip: Keep the list short, with 3 to 5 top priorities, to make sure the most important issues are addressed.

2. Bring a trusted support person, if helpful

Someone who knows you or the person you’re concerned about well can offer helpful observations and fill in gaps. Whenever possible, the person experiencing the concern should share their perspective first, with others adding details or clarification as needed. This helps keep their voice and experience at the center of the conversation.

3. Organize important health information

Come prepared with key information in one place, such as:

  • A current medication list, including doses and supplements
  • Allergies
  • Major diagnoses
  • The name and contact information of your primary clinician
  • Names of other doctors or specialists
  • Recent test results or hospital visits

Being organized saves time, reduces stress, and helps the care team focus on what matters most.

During the appointment: Stay engaged as a team

Start with what matters most

Open the visit with your top concerns so they don’t get lost:

  • “I have a few main things I’d like to cover today.”
  • “The biggest change I’ve noticed is…”

If you are concerned about changes in memory or thinking, it is okay to say so directly:

  • “I’ve noticed some changes in my memory and I’d like to understand what might be causing them.”
  • “I’m concerned about some changes we’ve noticed and would like to know whether they should be evaluated further”

Be clear and specific

Honest, concrete examples give your provider a better picture of what’s happening. Instead of “My memory is getting worse,” try “I’ve been repeating questions daily and forgetting recent conversations.”

You don’t need to work out what is causing a change before bringing it to your healthcare professional. Your job is to describe what you’ve noticed; their job is to help work out what might be behind it. For example, instead of saying “I think I’m developing dementia because I keep forgetting things,” you could say “I’ve noticed that I am forgetting recent conversations and asking the same questions more often.” Being clear, specific, and using plenty of examples gives clinical staff the raw information they need.

Ask questions and clarify

If something isn’t clear or you feel misunderstood, speak up. Clear understanding is essential to good care.

  • “What does that mean in everyday terms?”
  • “Could this be related to normal aging, medication, sleep, mood, hearing, or another health condition?”
  • “What do these results tell us, and what can’t they tell us?”
  • “Do I need additional testing or follow-up?”
  • “Would you recommend an evaluation with a specialist?”
  • “What would an evaluation involve?”
  • “When should I contact you rather than wait for the next appointment?”
  • “What should we watch for?”
  • “Who should I contact when things change?”
  • “I’m not sure that fully reflects what we’re seeing at home.”
  • “Can we explore that a bit more?”

Capture the information

Take brief notes, ask the person with you to help, or request written instructions or visit summaries so nothing is missed later. Confirm the plan before you leave.

A quick recap keeps everyone aligned:

  • Medication changes
  • Recommended lifestyle adjustments
  • Follow-up appointments or tests
  • Symptoms to monitor/document at home
  • Next steps
  • Who to contact if you have any questions or your symptoms change

You might ask: “Before I leave, may I repeat the plan in my own words to make sure I understood it correctly?” This is especially helpful while the information is still fresh.

Between appointments

Keep a running record

  • Changes in memory, behavior, or everyday function
  • Specific examples of what changed and when it happened
  • Mood or sleep patterns
  • Any side effects from medications

This makes future appointments more productive and focused. It can also help you notice patterns that may be useful for your healthcare team.

Final thoughts

Advocating for yourself in medical appointments starts with preparation, honesty, and a willingness to ask questions. If you notice persistent or concerning changes in memory or thinking, bringing them up is an important first step. Seeking an evaluation gives you and your care team an opportunity to understand what is happening and decide what support, if any, would be helpful.

It is important your voice is heard, your concerns are addressed, and your care reflects what matters most to you.