What Should I Ask the Doctor After a Dementia Diagnosis?
A diagnosis appointment often moves quickly, and it's easy to leave with more questions than you walked in with. Having a list prepared ahead of time can help you use that limited time well, and make sure the most important things get addressed before you leave the room.
Here is a starting list you can bring with you, or use to prepare for a follow-up conversation.
Understanding the Diagnosis Itself
What type of dementia is this? Alzheimer's, vascular, Lewy body, frontotemporal, or another form?
How was this diagnosis reached? Was other testing done to rule out reversible causes, like vitamin deficiencies, thyroid issues, medication side effects, or depression?
How confident are you in this diagnosis? What would confirm or change it?
What stage would you describe this as right now?
Asking "how sure are you" rather than "are you sure" tends to open up more detailed, useful answers, since it invites explanation rather than a simple yes or no.
What to Expect Going Forward
How does this type of dementia typically progress?
What symptoms or changes should we expect to see next?
How quickly does this type of dementia usually progress, understanding that every person is different?
What symptoms would signal we should call you or seek care sooner rather than waiting for the next appointment?
Treatment and Management
Are there medications that could help manage symptoms or slow progression?
What are the potential side effects, and how will we know if they're working?
Are there lifestyle changes, physical activity, diet, or cognitive engagement, that could support quality of life?
Are there non-drug therapies worth considering, like occupational therapy or cognitive stimulation programs?
Safety and Daily Functioning
Is it currently safe for my parent, spouse, or loved one to live alone?
Is it safe for them to continue driving? If not now, when should we revisit that conversation?
Are there specific safety modifications you'd recommend for the home at this stage?
What symptoms would indicate a need for more supervision or in-home support?
Planning Ahead
What specialists or additional resources would you recommend at this stage, a neurologist, a geriatric care manager, a support group?
Are there local or national resources you typically recommend to newly diagnosed families?
How often should we plan to have follow-up appointments?
Is there anything specific to this diagnosis that we should be thinking about, legally or financially, sooner rather than later?
For the Person Living With the Diagnosis
If your loved one is present and able to participate, it can be worth asking directly:
What do you want to understand better about this diagnosis?
What matters most to you in how we move forward from here?
Including them in the conversation, to whatever extent they're able to participate, supports their dignity and sense of agency in their own care.
A Few Practical Tips for the Appointment Itself
Bring a notebook, or ask if you can record the conversation. It's difficult to absorb everything in the moment, especially with an emotionally significant diagnosis.
Bring someone with you if you can. A second set of ears often catches details the first misses.
Don't feel pressured to ask everything in one visit. If the appointment is limited, prioritize your most pressing questions and save the rest for a follow-up call or visit.
Processing What You Learn
Getting answers to these questions is only the first step. Making sense of what they mean for your family, your role, and what comes next is its own process. Dementia coaching can help you prepare for this appointment, process what you learn afterward, and turn medical information into a clear, actionable plan.
Book a session to talk through your situation, or reach out with any questions first at info@emeralddementiacoach.com or 301-202-4251.
Emerald Dementia Coaching provides non-clinical coaching services and does not provide psychotherapy, medical advice, or treatment. This article is intended to help you prepare for conversations with your medical provider and is not a substitute for medical advice. If you are experiencing a mental health crisis, please call 911 or the 988 Suicide and Crisis Lifeline.
