Are you noticing changes in yourself or someone you know? Here's how to get ready for a conversation with your doctor.
TALKING TO A DOCTOR
If you are noticing changes that might be dementia, don’t wait. Talk to a medical professional as soon as you can to get the guidance and care you need.
It's common for people to ignore the changes happening to them, which can make them resistant to seeking help. Trust your instincts and keep asking questions - getting help sooner can open doors to support, treatment and symptom management.
Get connected with the right specialist
Your current providers - like your doctor or therapist - can help connect you to specialists such as neurologists. Different types of dementia require different expertise, and a full evaluation may take several steps. If you don’t have insurance or are having trouble finding a doctor, patient advocacy organizations can help.
Keep a symptom log of the changes you have been noticing, and how they’ve changed over time. Detailed notes are extremely helpful during medical visits, giving specialists valuable context of what’s happening day to day.
Reach out for support at every step
Along the way, patient advocacy organizations can provide education, support, and guidance. You can reach out to them for help navigating insurance or finding specialists. They can also support you in asking the right questions and speaking up if something isn’t clear.
HAVE IN HAND:
Tips from medical professionals and experienced caregivers on what to bring with you:
A symptom log noting changes that have happened over time, with examples of specific incidents that show how daily functioning has been affected
A list of current medications, medical history, and your family’s medical history
Your insurance information, including plan details and referral paperwork if required
Written questions or concerns to help guide the conversation - you can ask about the latest clinical trials if your doctor doesn’t mention them
BE READY FOR:
Tips from medical professionals and experienced caregivers on what to expect:
A multi-step process, involving neurology consults, brain imaging, and neuropsychological assessments
Insurance requirements, such as needing a referral from your primary care provider before seeing a specialist
Long wait times for specialists and time spent finding the right specialist - not all neurologists are trained in neurodegenerative conditions
Having to advocate for referrals or further testing when symptoms are subtle or dismissed
Emotional ups and downs during the diagnostic process
SYMPTOMS CHECKLIST
These checklists can help you to organize and describe symptoms to a doctor:
Frontotemporal dementia (FTD)
Lewy body dementia (LBD)
Vascular dementia
Alzheimer’s disease
REAL ADVICE FROM EXPERTS
Learn more about dementia on Roon - a free platform where medical experts, caregivers, and people with lived experience answer all of your health questions.
CLINICAL TRIALS AND RESEARCH
Learn about ongoing clinical trials and the newest advances in dementia treatment.
Beyond Memory — initiated by the Kissick Family Foundation, 2025
The content on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.