Coordinating Care Between Specialists

You're the General Manager of Your Loved One's Care Team

When your loved one was first diagnosed with dementia, you probably thought the hardest part would be learning to manage the symptoms. But if you're like most male caregivers, you've discovered something else entirely: coordinating between multiple doctors, specialists, and healthcare providers can feel like trying to conduct an orchestra where half the musicians are playing different songs.

You've become the central hub, whether you signed up for it or not. And honestly? You're probably doing a better job at it than you think.

Why You End Up Holding All the Pieces

Here's the reality that no one prepared you for: doctors don't talk to each other as much as they should. Your loved one's neurologist might not know what the cardiologist prescribed last month. The physical therapist might not realize that the new medication is causing balance issues. The primary care doctor might not be aware of the latest cognitive assessment results.

That's where you come in. You're the only one who sees the whole picture, who notices that the new heart medication coincided with increased confusion, or that the physical therapy exercises are helping with mood as well as mobility. You've become the keeper of the complete story.

Setting Up Your Command Center

Think of yourself as running a small business—because that's essentially what you're doing. Just like any good manager, you need systems that work for you.

Create a Master Calendar

Whether it's a paper planner, your phone, or a simple notebook, keep all appointments in one place. Include not just the date and time, but the purpose of each visit and what questions you want to ask. You aren’t being overly organized—you’re reducing the mental load you're carrying.

Maintain the Medical Notebook

This becomes your most valuable tool. One section for each doctor, with visit dates, what was discussed, new prescriptions, and follow-up instructions. When Dr. Smith asks if the medication Dr. Jones prescribed is helping, you'll have the answer right there instead of trying to remember three weeks later.

Designate a Communication Hub

Choose one family member or close friend to be your backup. Share important updates with them so you're not constantly fielding calls from worried relatives asking for the same information. This person can also step in during emergencies or when you need a break.

Becoming the Translator Between Specialists

Each specialist speaks their own language, and they often assume you understand more than you do. Don't let that intimidate you. Your job isn't to become a medical expert—it's to be an effective communicator.

Before Each Appointment

Write down your three most important questions or concerns. If you only get to ask one thing, what would it be? Put that first. Bring a list of all current medications, including over-the-counter supplements. Trust me, you think you'll remember, but when you're sitting in that exam room, your mind often goes blank.

During the Visit

Take notes, even if it feels awkward. Ask the doctor to slow down if they're going too fast. If they use a term you don't understand, ask them to explain it differently. A simple "Can you put that in everyday language?" works wonders. Most doctors appreciate caregivers who ask good questions.

After the Appointment

Send a brief summary to other specialists when relevant. A quick email saying "Just wanted to let you know that Dr. Johnson adjusted the blood pressure medication and wants to see how it affects energy levels over the next month" can prevent conflicts between treatments.

Managing the Information Overload

You're probably drowning in pamphlets, printouts, and websites that everyone keeps recommending. Here's the thing: you don't need to read everything. Focus on information that helps you solve immediate problems or prepares you for the next stage.

The Three-Pile System

Sort information into three categories: "Need to know now," "Good to know later," and "Nice to know but not essential." Be ruthless about that third pile. Your energy is limited, and it's better spent on what matters most right now.

Find Your Trusted Sources

Instead of trying to research everything yourself, identify two or three reliable sources for information. This might be your loved one's primary care doctor, a trusted website, or an experienced caregiver you've met. Having go-to sources saves time and reduces confusion.

When Specialists Disagree

This happens more often than you'd expect, and it puts you in an uncomfortable position. The neurologist wants to try a new medication while the primary care doctor is concerned about interactions. The physical therapist thinks your loved one can handle more activity while the cardiologist wants them to take it easy.

You're not expected to make these medical decisions, but you are the one who knows your loved one best. Speak up about what you observe at home. Share patterns you've noticed. Your input often helps doctors understand the real-world impact of their recommendations.

When specialists truly disagree, ask each one to explain their reasoning and what they see as the risks of the other approach. Sometimes the solution is a compromise, and sometimes one doctor needs information they don't have.

Building Relationships That Work

Remember, these healthcare providers are human too. They appreciate caregivers who are prepared, respectful, and honest about what's happening at home. You don't need to be perfect, but being consistent and communicative goes a long way.

Be the Guy They Want to Work With

Show up on time when possible, bring your questions written down, and follow through on instructions. When doctors know they can count on you to provide accurate information and implement their recommendations, they're more likely to take extra time to explain things and coordinate with other providers.

Don't Be Afraid to Advocate

If something isn't working, speak up. If you can't get through to a doctor when you have concerns, ask to speak with a nurse or see if there's a patient portal for communication. If a specialist consistently seems rushed or dismissive, discuss this with the primary care doctor. You have the right to feel heard and supported.

The Unexpected Benefits of Being the Hub

While coordinating care can feel overwhelming, many male caregivers discover some unexpected advantages to being the central point of contact. You develop a comprehensive understanding of your loved one's health that no single doctor has. You learn to spot patterns and changes that might otherwise be missed. You become an expert in your loved one's needs and preferences.

This knowledge becomes invaluable as the disease progresses and decisions become more complex. You're not just managing appointments—you're building relationships and gathering information that will serve you well down the road.

When You Need Backup

There will be times when managing all this coordination becomes too much, especially during health crises or as the dementia progresses. This doesn't mean you're failing—it means you're being realistic about your limits.

Consider hiring a geriatric care manager for complex situations, ask family members to take ownership of specific aspects of care, or look into patient navigator services that some medical centers offer. Getting help with coordination isn't giving up control; it's making sure your loved one gets the best possible care.

 Moving Forward with Confidence

You didn't choose to become the central hub of a medical team, but you've stepped into this role because you care deeply about your loved one's wellbeing. Every question you ask, every appointment you coordinate, every detail you track—it all matters more than you realize.

The specialists bring their expertise, but you bring something equally valuable: you know your loved one as a whole person, not just a collection of symptoms. You see how treatments affect their daily life, their mood, their dignity. That perspective is irreplaceable.

Being the hub of your loved one's care team isn't easy, but you're already proving you can handle it. Trust your instincts, ask for help when you need it, and remember that your dedication makes a real difference in the quality of care your loved one receives.

You've got this, and you don't have to figure it all out at once.

Check out my other newsletter for anyone caring for a loved one with dementia!