Medical appointments can feel overwhelming, especially when you are trying to process new information while also remembering everything you want to ask. Going in with a list of questions can help you better understand what is happening, what to expect, and what steps may come next. You do not need to ask every question at one appointment—start with the ones that matter most to your family right now.
Understand the Diagnosis
Ask what type of dementia is suspected or diagnosed and what information led to that conclusion. You may also want to ask whether additional testing is needed and whether any other medical conditions, medications, infections, vitamin deficiencies, or other factors could be contributing to the symptoms. Understanding the diagnosis can help you make more informed decisions about care and planning.
Ask What Changes to Expect
Dementia affects everyone differently, but your healthcare team may be able to explain changes that are commonly associated with the type of dementia your loved one has. Ask what symptoms may appear over time, what changes should prompt a call to the doctor, and what would require immediate medical attention. Knowing what to watch for can make changes feel a little less unexpected.
Review Medications and Treatment Options
Ask whether medications may help with symptoms, what benefits you might realistically expect, and what side effects to watch for. Make sure the healthcare team knows about all prescription medications, over-the-counter medicines, vitamins, and supplements being used. It is also helpful to ask how often medications should be reviewed as needs change.
Talk About Safety
Ask whether there are specific safety concerns you should begin watching for. Depending on the person’s abilities, this may include driving, managing medications, cooking, falls, wandering, firearms, or financial decisions. Safety recommendations should be based on the individual—not simply on the diagnosis—and may need to change as dementia progresses.
Ask About Changes in Behavior or Mood
Changes in behavior, personality, sleep, or mood can sometimes be related to dementia, but they can also have other causes. Ask the healthcare team about new anxiety, depression, agitation, hallucinations, sleep changes, or sudden differences in behavior. A sudden or dramatic change should be discussed promptly because illness, infection, pain, medication effects, or other medical problems may be contributing.
Discuss Daily Care and Support Needs
Ask what changes in daily abilities you should watch for and when additional help may be needed. This can include bathing, dressing, eating, medications, mobility, and other everyday tasks. Your healthcare team may also be able to recommend occupational therapy, physical therapy, home health services, community programs, or other resources that can help support both the person with dementia and their caregiver.
Ask About Planning for the Future
Ask what kinds of planning may be helpful while your loved one can still participate in decisions. This may include advance directives, powers of attorney, financial planning, future living arrangements, and preferences for care. These conversations can be difficult, but having them earlier can help families make future decisions based on the person’s wishes rather than having to guess later.
Know Who to Contact Between Appointments
Before you leave, ask who you should contact when questions or concerns come up between appointments. Find out whether you should call the physician, nurse, specialist, or another member of the care team, and how to reach them. Knowing where to turn can make it easier to get help when something changes.
Bring Notes and Keep Asking Questions
Keep a running list of questions, symptoms, and changes you notice between appointments. Bringing notes can help you remember important details and give the healthcare team a clearer picture of what is happening at home. If you do not understand an answer, it is okay to ask for it to be explained differently. You are an important part of the care team.
You do not have to know all the right questions from the beginning. The Dementia Roadmap is here to help you learn what to ask, what to watch for, and how to feel more prepared for the road ahead.
