Walking into your first dementia appointment can feel overwhelming. You're probably juggling worry, questions, and the practical challenge of making sure you don't forget anything important. The good news is that a little preparation can make this visit much more productive and help you get the answers you need.
Here's what you need to bring:
- A complete medication list (including supplements)
- A written timeline of the symptoms you've noticed
- Insurance cards and identification
- A list of questions for the doctor
- A second person to help listen and take notes
- Recent medical records or test results if this is your first visit with this specialist
- A notebook or phone to record what the doctor says
The first appointment is your chance to get clarity on what's happening, what type of dementia might be involved, and what steps come next. This article will walk you through exactly what to gather before you go, what questions to ask, and how to make the most of this crucial visit.
Key Takeaway:
Come prepared with a complete medication list, a written symptom timeline with specific examples, all insurance cards, a list of questions for the doctor, and a second person to take notes. Being organized helps the doctor make an accurate diagnosis and ensures you leave with a clear plan for next steps.
Why the First Dementia Appointment Matters So Much
This initial evaluation is typically longer and more detailed than a regular doctor visit. The neurologist or geriatrician will spend time reviewing your loved one's medical history, conducting cognitive tests, and possibly ordering additional scans or lab work. They're looking for patterns that point to a specific type of dementia and ruling out other conditions that can mimic dementia symptoms (like thyroid problems, vitamin deficiencies, or medication side effects).
Going in prepared helps the doctor see the full picture. When you bring detailed information about symptoms, medications, and medical history, you save time and help ensure an accurate diagnosis. Many families leave their first appointment wishing they had brought more information or asked different questions. This guide will help you avoid that regret.
Step 1: Gather All Medication Information
One of the most important things to bring is a complete, current list of every medication your loved one takes. This includes prescription medications, over-the-counter drugs, vitamins, supplements, and herbal remedies. Some medications can cause confusion or memory problems, and the doctor needs to see the complete picture.
Create a medication list that includes:
- Full name of each medication (brand and generic if possible)
- Dosage and strength
- How often it's taken and what time of day
- Prescribing doctor's name
- What condition it treats
- Any recent changes or new medications in the past 6 months
The easiest approach is to gather all the pill bottles and either photograph them clearly or physically bring them to the appointment. If your loved one uses multiple pharmacies, call each one and request a printout of all active prescriptions. This catches medications you might have forgotten about.
Don't skip the supplements and vitamins. Even "natural" products can interact with other medications or affect cognitive function, and doctors need to know about everything.
Step 2: Write Down a Symptom Timeline
Doctors need to understand when symptoms started and how they've progressed. Your detailed observations are incredibly valuable, because the person with dementia often doesn't recognize or remember their own symptoms. A written timeline helps the doctor determine whether this is truly dementia, what type it might be, and how quickly it's progressing.
Your symptom timeline should include:
- When you first noticed something was different (even if it seemed minor at the time)
- Specific examples of memory loss, confusion, or personality changes
- Whether symptoms appeared gradually or suddenly
- Any events that seemed to trigger a decline (falls, hospitalizations, deaths in the family, moves)
- Tasks your loved one used to do easily but now struggles with
- Safety incidents like getting lost, leaving the stove on, or falls
- Changes in mood, sleep, or behavior
Be as specific as possible. Instead of "Mom's memory is bad," write "Mom asked me the same question about my daughter's wedding four times in one conversation" or "Dad couldn't figure out how to use the microwave he's owned for 10 years." These concrete examples help the doctor understand the severity and type of cognitive changes.
If possible, go back through calendars, text messages, or family conversations to pin down when changes began. Many families realize in hindsight that subtle signs appeared months or even years before they became concerning.
Step 3: Compile Medical History and Records
The doctor will want to know about your loved one's overall health history, not just current symptoms. Certain medical conditions increase dementia risk or affect treatment options. If this is your first visit with this specialist, bringing records from other providers saves time and prevents repeated testing.
Gather these medical records if available:
- Previous cognitive testing or brain imaging (MRI, CT scans)
- Recent lab work (especially thyroid tests, B12 levels, kidney and liver function)
- Records from recent hospitalizations
- Reports from other specialists, especially neurologists or psychiatrists
- Hearing and vision test results
Prepare a verbal summary of major health history:
- Previous strokes, heart attacks, or other cardiovascular problems
- Head injuries or concussions
- Depression, anxiety, or other mental health conditions
- Diabetes, high blood pressure, or high cholesterol
- Sleep problems or sleep apnea
- Family history of dementia or Alzheimer's disease
If getting copies of medical records feels like too much, at least write down the names and contact information for all current doctors. The specialist's office can request records directly if needed.
Step 4: Prepare Your Questions for the Doctor
You'll have many questions, and it's easy to forget them once you're in the exam room. Write them down ahead of time so you make sure to cover everything that matters to you. There are no silly questions, and good doctors appreciate when families come prepared.
Essential questions to ask at your first dementia appointment:
- What type of dementia do you suspect, and how certain are you?
- What stage are we in, and how quickly does this type typically progress?
- Are there medications that might slow progression or manage symptoms?
- What additional tests do you recommend, and what will they tell us?
- Is it safe for my loved one to continue driving?
- What symptoms or changes should prompt me to call you before the next appointment?
- How often should we schedule follow-up visits?
- Can you refer us to any support services, therapists, or social workers?
- What should we start planning for now (legal, financial, safety)?
- Are there any clinical trials we should consider?
Leave space in your notebook to write down the answers. If the doctor uses medical terms you don't understand, ask them to explain in plain language. This is your appointment, and you deserve clear, understandable information.
For a comprehensive list of questions, see our guide on questions to ask your doctor after a dementia diagnosis.
Step 5: Bring Insurance Cards and Identification
This may seem obvious, but in the stress of preparing for the appointment, basic paperwork sometimes gets forgotten. Make sure you have current insurance cards for both medical and prescription coverage, as well as a photo ID for your loved one. If you're not sure whether this specialist is in-network, call your insurance company beforehand to verify coverage.
If your loved one qualifies for Medicare, bring both the Medicare card and any supplemental insurance cards. Some families are surprised by costs if they haven't confirmed coverage in advance.
Also bring any legal documents that establish your authority to discuss medical care, especially if you're an adult child rather than a spouse. While most doctors will talk with family members who accompany the patient, having healthcare power of attorney or guardianship papers can prevent delays if questions arise about information sharing.
Step 6: Bring a Second Person (and Choose Wisely)
This is one of the most important recommendations: bring another adult with you to the appointment. This person serves as a second set of ears, takes notes while you're focused on the conversation, and helps you remember what the doctor said afterward. Studies show that people typically remember less than half of what their doctor tells them in medical appointments, especially when the news is stressful.
The second person should be someone who:
- Knows your loved one well and can contribute observations
- Will stay calm and supportive during difficult conversations
- Can take good notes or record the conversation (with permission)
- Is someone you trust and can talk openly with afterward
Many families bring a sibling, adult child, or close friend. If possible, choose someone who will be involved in caregiving decisions going forward. This helps ensure everyone hears the same information directly from the doctor rather than getting it secondhand.
Some families find it helpful to ask the doctor's permission to record the appointment on a phone. This way you can listen again later and catch details you missed. Most doctors are fine with this, but always ask first.
Step 7: Bring Something to Track Information Going Forward
While you're at this appointment, you'll receive a lot of new information: follow-up appointment dates, new prescriptions, referrals to other specialists, instructions for tests, and recommendations for next steps. You need a system to capture all of this so nothing falls through the cracks.
Bring a method for tracking ongoing care:
- A dedicated notebook or binder with sections for appointments, medications, questions, and important dates
- Your phone with a note-taking app or voice recorder
- A calendar (paper or digital) to record follow-up appointments immediately
- A folder to collect any papers or printouts the doctor gives you
This is also a good time to think about how you'll organize all the information that's about to come your way. Some families prefer a simple notebook they can carry everywhere. Others set up a binder with tabs for different categories. Many find that a caregiving coordination app makes it easier to keep everything in one place and share updates with other family members.
What to Expect During the Appointment
Knowing what will happen during the visit can reduce anxiety. The first dementia appointment typically lasts 60 to 90 minutes. The doctor will likely start by interviewing both you and your loved one about symptoms, medical history, and daily functioning. They'll ask your loved one questions to assess memory, language, problem-solving, and orientation.
Common tests at the first appointment include:
- Cognitive screening tests like the Mini-Mental State Exam or Montreal Cognitive Assessment
- Physical and neurological examination
- Review of medications and vital signs
- Discussion of any imaging or lab tests already completed
The doctor may or may not give you a definitive diagnosis at this first visit. Sometimes additional testing is needed to rule out other conditions or determine the specific type of dementia. That's completely normal. What you should leave with is a clear plan for next steps, whether that's scheduling an MRI, adjusting medications, or coming back for follow-up testing.
After the Appointment: What to Do with All This Information
Once you leave the appointment, take a few minutes to organize what you learned. Review your notes while the conversation is still fresh, and fill in any gaps. If you brought someone with you, compare notes to make sure you captured everything accurately.
Key follow-up steps:
- Schedule any recommended follow-up appointments before you leave, or call within 24 hours
- Fill new prescriptions right away
- Schedule any ordered tests or imaging
- Share key information with family members who need to know
- Write down any questions that came up after the appointment to ask next time
- Begin working on any action items the doctor recommended
Many families find it helpful to type up a summary of the appointment and email it to key family members. This keeps everyone on the same page and reduces the chances of miscommunication. If you're using a care coordination app, you can store the visit notes and share access with family members so everyone sees the same information.
For guidance on next steps after diagnosis, see our comprehensive guide on what to do after a dementia diagnosis.
How CareThru Helps You Prepare for Every Appointment
Managing dementia care means juggling multiple doctors, medications, symptoms, and appointments. CareThru is designed specifically to help family caregivers stay organized through every stage of the journey.
Create a complete medication list: Store medications with photos and dosages, making it easy to share accurate information with any doctor.
Keep a running symptom log: Note changes as they happen, then review patterns over time. This gives your doctor the detailed timeline they need.
Store all provider information: Keep doctor contact information, appointment history, and medical records in one accessible place.
Share updates with family: Everyone stays informed without repeated phone calls or email chains.
Pull up everything instantly: When it's time for your appointment, access everything the doctor needs to see in seconds rather than scrambling through papers.
Many CareThru users say that having everything organized in the app reduces their stress and helps them feel more confident in medical appointments.
Frequently Asked Questions About Your First Dementia Appointment
What if my loved one refuses to go to the appointment?
This is a common challenge, especially when the person doesn't recognize their own symptoms. Try framing it as a routine checkup or emphasizing that the doctor wants to make sure their medications are working correctly. Avoid arguing about memory problems. If refusal continues, call the doctor's office for advice, as they often have strategies that work. In some cases, the doctor may be willing to get initial information from family members first.
Should I tell my loved one beforehand what the appointment is for?
This depends on the individual and their level of awareness. If they're already worried about memory changes, being honest can reduce anxiety and let them prepare questions. If they tend to become very anxious or refuse medical care, you might frame it more generally as a "checkup" or "routine visit." There's no one right answer, and you know your loved one best.
How long will it take to get a diagnosis?
Some people receive a preliminary diagnosis at the first appointment, but many need additional testing first. It can take several weeks or even months to complete imaging, lab work, and follow-up evaluations. This waiting period is hard, but a careful, thorough evaluation leads to better treatment decisions. A definitive diagnosis of specific dementia types sometimes requires ruling out many other possibilities first.
What if the doctor says it's not dementia?
That's actually good news, even though it means you're still looking for answers. Many conditions can cause dementia-like symptoms, including depression, medication side effects, thyroid problems, vitamin B12 deficiency, or sleep disorders. These conditions are often treatable. The doctor should explain what they think is causing the symptoms and outline next steps for treatment.
Do I need to bring my loved one, or can I go alone first?
Most dementia specialists need to examine the patient in person for cognitive testing and evaluation. However, some doctors are willing to do an initial consultation with family members only, especially if getting the person to the appointment is extremely difficult. Call the office ahead of time to ask about their policy. Even if your loved one must attend, you can often arrive early or call beforehand to share sensitive information privately.
How much does a dementia evaluation cost?
Costs vary widely depending on your insurance, location, and what testing is done. Medicare and most private insurance cover diagnostic evaluations when medically necessary. A typical first visit might cost anywhere from a small copay to several hundred dollars if you haven't met your deductible. Call both the doctor's office and your insurance company beforehand to understand your expected costs.
What if I disagree with the doctor or want a second opinion?
You have every right to seek a second opinion, especially for something as significant as a dementia diagnosis. Good doctors understand this and shouldn't be offended. If something about the diagnosis, treatment plan, or doctor's approach doesn't feel right, trust your instincts. Ask for copies of all test results and records, then schedule a consultation with another specialist. Getting a second opinion often provides valuable confirmation or reveals additional options.
Should I bring up concerns about driving at this first appointment?
Yes, absolutely. Driving safety is one of the most important topics to address early. The doctor can assess whether your loved one is still safe to drive and may recommend a formal driving evaluation. This conversation is difficult, but it's much better to address it proactively than to wait for an accident. The doctor can be the "bad guy" who delivers unwelcome news, which sometimes makes it easier for the family.
Disclaimer: This article provides general information about preparing for dementia appointments and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult qualified healthcare providers for guidance specific to your loved one's situation.
Sources
- Alzheimer's Association. (2024). "Visiting Your Doctor." Available at: https://www.alz.org/help-support/caregiving/daily-care/doctor-health-care-visits
- National Institute on Aging. (2024). "Talking with Your Doctor." Available at: https://www.nia.nih.gov/health/talking-with-your-doctor
- Mayo Clinic. (2024). "Dementia: Diagnosis and Treatment." Available at: https://www.mayoclinic.org/diseases-conditions/dementia/diagnosis-treatment/drc-20352019
- Family Caregiver Alliance. (2024). "Working with Health Care Professionals." Available at: https://www.caregiver.org/resource/working-health-care-professionals/
- American Academy of Neurology. (2024). "Practice Parameter: Diagnosis of Dementia." Available at: https://www.aan.com
- Alzheimer's Society (UK). (2024). "Tests and Scans for Diagnosing Dementia." Available at: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/tests-scans-diagnosing-dementia
- Agency for Healthcare Research and Quality. (2024). "Questions to Ask Your Doctor." Available at: https://www.ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/index.html
- National Institute on Aging. (2024). "Assessing Cognitive Impairment in Older Patients." Available at: https://www.nia.nih.gov/health/assessing-cognitive-impairment-older-patients
- Medicare.gov. (2024). "Your Medicare Coverage: Doctor and Other Health Care Provider Visits." Available at: https://www.medicare.gov
- Alzheimer's Association. (2024). "Questions for Your Doctor." Available at: https://www.alz.org/help-support/caregiving/daily-care/questions-for-doctor