Walking into a doctor's office after a dementia diagnosis can feel overwhelming. Your mind races with questions, fears, and uncertainty about what comes next. But this appointment is critical. The questions you ask now will shape your understanding of the disease, guide treatment decisions, and help you plan for the months and years ahead.
Why these questions matter:
The first few appointments after diagnosis represent a crucial window for gathering information while your loved one can still participate in discussions. Doctors have limited appointment time, and it's easy to leave the office realizing you forgot to ask something important. Having a prepared list ensures you get the information your family needs to make informed decisions.
What you'll learn from this guide:
- Essential questions about diagnosis accuracy and disease type
- Critical questions about treatment options and effectiveness
- Important questions about safety and daily living
- Practical questions about progression and what to expect
- Financial and care planning questions
- Questions about support and resources
Print this guide and bring it to your next appointment. Check off questions as they're answered, and add your own specific concerns. Remember: there are no silly questions when it comes to understanding dementia and planning for your loved one's care.
Before the Appointment: How to Prepare
Maximize your appointment time by preparing in advance.
What to bring to the doctor's appointment:
- Complete medication list: Include all prescriptions, over-the-counter medications, vitamins, and supplements with dosages
- Symptom diary: Specific examples of memory problems, confusion episodes, or behavior changes with dates and contexts
- Family medical history: Information about relatives with dementia or other neurological conditions
- Insurance information: Cards and policy numbers
- Legal documents: Copies of healthcare power of attorney and HIPAA release forms if completed
- Another person: Bring a family member or friend to take notes while you focus on the conversation
- Recording device: Ask permission to record the appointment so you can review details later
Questions to write down before the appointment:
Review this guide and circle or highlight questions most relevant to your situation. Add your own specific concerns at the bottom. Prioritize your most important questions in case time runs short.
Questions About Diagnosis and Disease Type
Understanding exactly what type of dementia your loved one has and how confident the diagnosis is forms the foundation for everything else.
☐ What specific type of dementia does my loved one have?
Dementia is an umbrella term. Knowing whether it's Alzheimer's disease, vascular dementia, Lewy body dementia, frontotemporal dementia, or mixed dementia matters because each type progresses differently and responds to different treatments.
Follow-up questions:
- How does this type differ from other forms of dementia?
- What are the characteristic symptoms of this specific type?
☐ How confident are you in this diagnosis?
Some dementia diagnoses are straightforward; others are more uncertain, especially in early stages.
Follow-up questions:
- What tests led to this diagnosis?
- Is there any chance this could be something else?
- Should we get a second opinion or see a specialist for confirmation?
☐ What stage of dementia is my loved one in currently?
Dementia typically progresses through early, middle, and late stages. Understanding current stage helps set realistic expectations.
Follow-up questions:
- What specific symptoms indicate this stage?
- How long do people typically stay in this stage?
- What symptoms will signal progression to the next stage?
☐ What testing was done to reach this diagnosis?
Understanding the diagnostic process helps you know how thorough the evaluation was.
Follow-up questions:
- Were brain imaging tests (MRI or CT scan) performed?
- What cognitive tests were administered?
- Were blood tests done to rule out other conditions?
- Should any additional testing be done?
☐ Could any other medical conditions be contributing to cognitive symptoms?
Sometimes treatable conditions like vitamin deficiencies, thyroid problems, depression, or medication side effects mimic or worsen dementia symptoms.
Follow-up questions:
- Have we ruled out reversible causes of cognitive decline?
- Are any of my loved one's current medications potentially making symptoms worse?
- Should we test for any nutritional deficiencies or other medical issues?
For more context on the diagnostic process and what happens immediately after diagnosis, see our guide on what to do after dementia diagnosis.
Questions About Treatment and Medication
Currently, there's no cure for most types of dementia, but treatments may help manage symptoms and potentially slow progression.
☐ What medications are available for this type of dementia?
Different dementia types respond to different medications. Some drugs address cognitive symptoms; others target behavioral issues.
Follow-up questions:
- What are the names of medications you're recommending?
- How do these medications work?
- What improvement should we realistically expect from these medications?
- How long does it typically take to see results?
☐ What are the potential side effects of recommended medications?
All medications carry side effects. Understanding what to watch for helps you monitor your loved one's response.
Follow-up questions:
- What side effects are most common?
- What serious side effects should prompt me to call you immediately?
- How long do side effects typically last?
- If side effects are intolerable, what alternatives exist?
☐ Are there any clinical trials we should consider?
Clinical trials give access to cutting-edge treatments not yet widely available and contribute to dementia research.
Follow-up questions:
- What clinical trials are currently recruiting participants?
- What would participation involve in terms of time and procedures?
- What are the potential benefits and risks?
- Where can I find information about available trials?
☐ What non-medication treatments might help?
Lifestyle modifications, cognitive therapies, and other interventions may supplement medications.
Follow-up questions:
- Would occupational therapy or speech therapy be beneficial?
- Are there specific cognitive exercises or brain training programs you recommend?
- What role does physical exercise play in managing symptoms?
- Should we try music therapy, art therapy, or other alternative approaches?
☐ What lifestyle changes could help slow progression?
While we can't stop dementia, certain habits may support brain health.
Follow-up questions:
- What dietary changes do you recommend?
- How much and what type of exercise is ideal?
- Are there specific mental activities that help?
- Should we modify social activities?
- What about sleep patterns and sleep quality?
☐ Should we see any other specialists?
Comprehensive dementia care often involves a team of professionals.
Follow-up questions:
- Do we need to see a neurologist, geriatrician, or geriatric psychiatrist?
- Would a neuropsychologist evaluation help clarify cognitive strengths and weaknesses?
- Should we consult with an occupational therapist for home safety recommendations?
- Would a social worker help coordinate resources and care planning?
Questions About Safety and Daily Living
Practical safety questions help you modify the environment and routines to keep your loved one safe.
☐ Is it safe for my loved one to drive?
Driving is often the most contentious safety issue families face.
Follow-up questions:
- What specific concerns about driving exist with this diagnosis?
- Can you provide a formal driving assessment or referral?
- How will we know when it's definitely time to stop driving?
- What should we do if my loved one refuses to stop driving?
☐ Can my loved one continue living alone?
Independent living may be possible in early stages but requires honest assessment.
Follow-up questions:
- What specific risks exist if they live alone?
- What safety measures or monitoring systems would make living alone safer?
- What warning signs indicate living alone is no longer safe?
- How often should someone check on them?
☐ Can my loved one continue working?
Some people with early-stage dementia can continue working, especially in familiar roles.
Follow-up questions:
- What job tasks might be difficult or unsafe given this diagnosis?
- Should we disclose the diagnosis to my loved one's employer?
- Are there workplace accommodations that might help?
- How will we know when working is no longer appropriate?
☐ What home safety modifications should we make?
Proactive safety changes prevent accidents and injuries.
Follow-up questions:
- What are the biggest fall risks we should address?
- Should we be concerned about wandering or getting lost?
- What about cooking, appliance use, and fire safety?
- Are there specific household items or chemicals we should secure?
☐ How do we handle financial management and decision-making?
Dementia progressively impairs judgment and financial reasoning.
Follow-up questions:
- At what point should someone else manage finances?
- How do we know when my loved one can no longer make sound decisions?
- What legal documents should we complete while they have capacity?
- Can you provide documentation of capacity for legal purposes if needed?
For detailed guidance on safety modifications and legal planning, see our article on helping a parent after dementia diagnosis.
Questions About Disease Progression and What to Expect
Understanding what lies ahead helps you plan proactively rather than react in crisis.
☐ How quickly does this type of dementia typically progress?
Progression rates vary widely, but knowing typical patterns helps with planning.
Follow-up questions:
- What's the usual progression timeline for this specific type?
- What factors might affect how quickly symptoms worsen?
- Are there stages we should prepare for?
☐ What symptoms should we expect to develop over time?
Knowing what's coming helps you recognize changes and adjust care accordingly.
Follow-up questions:
- Will my loved one eventually not recognize family members?
- What behavioral or personality changes are typical?
- Will they lose ability to communicate?
- What physical symptoms might develop?
- Will they eventually need help with basic activities like eating, bathing, and dressing?
☐ What symptoms or changes should prompt me to call you between appointments?
Knowing when to seek medical advice prevents both unnecessary panic and dangerous delays.
Follow-up questions:
- What constitutes an emergency requiring immediate medical attention?
- What changes warrant a phone call to your office?
- What symptoms can wait until the next scheduled appointment?
- Is there an after-hours number if urgent issues arise?
☐ How often should we have follow-up appointments?
Regular monitoring allows for medication adjustments and care planning updates.
Follow-up questions:
- How frequently should we see you or the specialist?
- What should we track or document between appointments?
- Will you need to repeat cognitive testing periodically?
☐ What can we do to make my loved one more comfortable as symptoms progress?
Comfort and quality of life remain important throughout the disease.
Follow-up questions:
- How do we maintain dignity and quality of life?
- What activities can provide enjoyment even as cognition declines?
- How do we handle distressing symptoms like agitation or anxiety?
- What pain management options exist if needed?
☐ What does end-stage dementia look like, and how should we prepare?
While this is difficult to discuss, understanding the trajectory helps with advance planning.
Follow-up questions:
- What typically happens in the final stages?
- What are signs that end of life is approaching?
- When should we consider hospice care?
- What medical decisions should we discuss and document now while my loved one can participate?
For more information about recognizing when care needs change, see our guide on how to know when it's time for memory care.
Questions About Behavioral and Psychological Symptoms
Dementia often causes challenging behaviors beyond memory loss.
☐ What behavioral symptoms are common with this type of dementia?
Different dementia types present different behavioral challenges.
Follow-up questions:
- Should we expect agitation, aggression, or wandering?
- Are hallucinations or delusions common with this type?
- What about depression, anxiety, or paranoia?
- How do we distinguish dementia-related behaviors from other medical issues?
☐ How should we respond to challenging behaviors?
Effective response strategies can prevent escalation and reduce distress.
Follow-up questions:
- What's the best way to respond when my loved one becomes agitated?
- How do we handle repetitive questions or statements?
- What should we do if they become paranoid or accusatory?
- Are there medications for severe behavioral symptoms?
☐ What can trigger or worsen behavioral symptoms?
Understanding triggers helps prevent difficult situations.
Follow-up questions:
- Does time of day affect symptoms (sundowning)?
- Can pain, constipation, or infections worsen confusion or agitation?
- What environmental factors should we modify?
- How do changes in routine affect behavior?
Questions About Support, Resources, and Care Planning
You don't have to navigate dementia care alone. Many resources exist to help families.
☐ What support services and resources are available?
Knowing what help exists prevents isolation and burnout.
Follow-up questions:
- Can you refer us to local Alzheimer's Association chapters or support groups?
- What adult day programs exist in our area?
- Are there respite care options to give caregivers breaks?
- What in-home care services might help?
- Where can we find reliable information about dementia care?
☐ When should we consider more intensive care options?
Understanding the continuum of care helps with future planning.
Follow-up questions:
- At what point do families typically need in-home care assistance?
- When do people usually transition to assisted living or memory care?
- How do we know when we can no longer provide adequate care at home?
- What factors should guide these decisions?
☐ Are there caregiver support resources you recommend?
Caregiver wellbeing directly impacts quality of care.
Follow-up questions:
- What support groups exist for family caregivers?
- Can you refer us to a social worker or care coordinator?
- What resources exist for caregiver stress management?
- Are there counseling services specifically for dementia caregivers?
☐ What financial assistance or insurance coverage might help pay for care?
Dementia care is expensive. Understanding payment options is crucial.
Follow-up questions:
- Does Medicare cover any dementia-related services?
- Would Medicaid planning be appropriate for our situation?
- Are the medications you're prescribing covered by my loved one's insurance?
- What costs should we budget for?
- Should we consult with an elder law attorney about financial planning?
Questions About Family Genetic Risk
If you're caring for a parent with dementia, you may wonder about your own risk.
☐ Is dementia hereditary? What's my risk?
Some dementia types have genetic components; others don't.
Follow-up questions:
- Does this specific type run in families?
- Should I or my siblings consider genetic testing?
- What can we do to reduce our risk of developing dementia?
- At what age should we start monitoring for symptoms?
☐ Are there preventive measures family members should take?
While we can't prevent all dementia, certain lifestyle factors may reduce risk.
Follow-up questions:
- What lifestyle habits support brain health?
- Are there warning signs family members should watch for?
- Should family members have baseline cognitive testing?
Questions to Ask About Your Specific Situation
Every family's situation is unique. Add questions specific to your circumstances:
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After the Appointment: What to Do Next
The appointment doesn't end when you leave the office.
Immediately after the appointment:
- Review notes with the person who accompanied you. Compare what each of you heard to ensure accuracy.
- Organize information. Write down key points, medication instructions, recommended next steps, and follow-up appointment dates.
- Fill prescriptions promptly so you can start medications as directed.
- Share information with family. Decide who needs to know what was discussed and communicate clearly.
- Schedule follow-up appointments before you forget, including any specialist referrals.
- Research resources mentioned by the doctor, such as support groups or community services.
Create a system for tracking medical information:
Use either a physical binder or a digital tool like CareThru to maintain:
- Complete and current medication lists
- All healthcare provider contact information
- Appointment notes and decisions made
- Questions that arise between appointments
- Symptom diary with specific examples and dates
- Test results and medical records
For a comprehensive guide on organizing medical information and care, see our first 90 days after dementia diagnosis checklist.
How CareThru Helps You Maximize Doctor Appointments
Getting the most from limited appointment time requires preparation and organization. CareThru helps families stay on top of medical care.
Before appointments:
- Store your question list in the app so it's always accessible
- Review symptom logs and behavior patterns to share with doctors
- Access complete medication lists instantly
- Note specific concerns that emerged since the last visit
During appointments:
- Pull up relevant information on your phone when doctors ask questions
- Record key points in the notes feature in real time
- Share appointment outcomes with family immediately
After appointments:
- Post notes about what the doctor said so all family members see identical information
- Update medication lists with any changes
- Set reminders for follow-up appointments or tasks
- Track whether new medications or interventions are helping
Between appointments:
- Log symptoms, behaviors, and concerns as they happen
- Identify patterns over time to discuss at next visit
- Track medication side effects
- Document questions as they arise so nothing gets forgotten
The platform doesn't replace good medical care, but it ensures you arrive prepared, leave informed, and maintain comprehensive records that support better decision-making.
Frequently Asked Questions About Asking Doctors Questions
What if I forget to ask something important during the appointment?
Call the doctor's office afterward. Many questions can be answered over the phone or through patient portals. You can also note the question for your next appointment. If it's urgent or concerns safety, don't wait. Call right away and explain you need clarification.
How do I get the doctor to take more time with us when appointments feel rushed?
Schedule longer appointments if possible, specifying you need extended time to discuss a new diagnosis. Arrive with written questions prioritized by importance. If time runs short, ask which questions are most critical to address now and which can wait. Consider scheduling a separate follow-up specifically for care planning discussions.
What if the doctor uses medical terms I don't understand?
Stop and ask for clarification in plain language: "I'm not familiar with that term. Can you explain what that means?" Don't worry about seeming uninformed. Doctors should communicate in ways patients understand. If explanations remain confusing, ask for written materials or reliable websites where you can learn more.
Should I bring my loved one to appointments, or is it better to go alone?
In early-stage dementia, include your loved one in appointments. They deserve to participate in discussions about their care and treatment. As dementia progresses, evaluate whether their presence is still helpful or whether they become confused or upset by medical discussions. Some families find splitting appointments works well: loved one attends part, then waits outside while caregiver discusses sensitive topics.
What if my loved one's doctor doesn't seem knowledgeable about dementia?
Primary care doctors vary in dementia expertise. If you feel your loved one's doctor lacks necessary knowledge, request a referral to a specialist: neurologist, geriatrician, or geriatric psychiatrist. Specialists focus specifically on cognitive disorders and typically have deeper expertise in diagnosis and treatment. Don't hesitate to seek a second opinion if you're concerned about care quality.
How often should we see the doctor after a dementia diagnosis?
Initially, every 3-6 months is typical for monitoring disease progression and medication effectiveness. Frequency may increase if symptoms worsen rapidly or if behavioral issues require management. Between scheduled appointments, contact the office for sudden changes, medication concerns, or safety issues. Your doctor will recommend an appropriate follow-up schedule based on individual circumstances.
What if family members disagree about questions to ask or information from the doctor?
Bring multiple family members to important appointments when possible so everyone hears the same information directly from the physician. Use shared platforms like CareThru to post appointment notes so all family sees identical information. If disagreements persist, consider family mediation or working with a geriatric care manager who can facilitate communication and decision-making.
Should I ask about end-of-life care in early appointments?
Yes. While difficult, discussing end-of-life wishes early, while your loved one can still participate meaningfully, is crucial. Ask about the typical disease course, what end-stage dementia involves, and when to consider hospice. These conversations inform advance directive documents and ensure everyone understands your loved one's preferences. Don't avoid these topics out of discomfort; they're essential for honoring your loved one's wishes.
Disclaimer: This article provides general guidance about questions to ask doctors after a dementia diagnosis and is not a substitute for professional medical advice. Every person's situation is unique. Always consult with your loved one's healthcare providers about specific medical decisions, treatment options, and care planning appropriate to their individual circumstances.
Sources
- Alzheimer's Association. (2024). "Doctor and Health Care Visits." Available at: https://www.alz.org/help-support/caregiving/daily-care/doctor-health-care-visits
- National Institute on Aging. (2024). "Talking with Your Doctor About Sensitive Topics." Available at: https://www.nia.nih.gov/health/talking-your-doctor-about-sensitive-topics
- 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). "Dementia Quality Measures." Available at: https://www.aan.com
- 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
- Alzheimer's Association. (2024). "FDA-Approved Treatments for Alzheimer's." Available at: https://www.alz.org/alzheimers-dementia/treatments/medications-for-memory
- National Institute on Aging. (2024). "Participating in Alzheimer's Disease Clinical Trials and Studies." Available at: https://www.nia.nih.gov/health/participating-alzheimers-disease-clinical-trials-and-studies
- Medicare.gov. (2024). "Medicare Coverage of Dementia Care." Available at: https://www.medicare.gov
- Alzheimer's Society (UK). (2024). "Questions to Ask the Doctor About Dementia." Available at: https://www.alzheimers.org.uk/get-support/help-dementia-care/getting-diagnosis