Questions Every Family Should Ask After a Dementia Diagnosis

The right questions, asked early, change the next year of caregiving. Bring this list — or your own adapted version of it — to your next medical appointment, your next family meeting, and your own quiet planning time. The goal is not to interrogate anyone. It's to make the invisible decisions visible while you still have time to make them well.

Questions to ask the doctor

Most clinical appointments are short. Sending your questions in advance through the patient portal — and asking the front desk for the longest available appointment — usually doubles the amount of time you'll get to discuss them.

• What type of dementia is this, and how is it likely to progress?
• What can we reasonably expect in the next 6 to 12 months?
• Which medications should we start, stop, or adjust?
• What specialists should be involved, and how do we coordinate them?
• Are there clinical trials or programs we should consider?
• What symptoms should send us to the ER versus just calling your office?
• How often should we plan to follow up?

Questions to ask your family

These conversations are some of the most important — and the most avoided. Try to have a first version of them in the first 90 days.

• Who is the primary point of contact for medical decisions?
• Who handles finances, legal paperwork, and insurance?
• How will we share updates — group text, shared note, weekly call?
• What can each person realistically commit to each week?
• How will we make decisions when we disagree?
• When do we need to revisit this plan?

Questions to ask yourself

These are the questions almost no one is asking on your behalf. Make space for them, even if it's just a quiet walk.

• What does my loved one care about most in their daily life?
• What am I willing to do? What am I not?
• Who can I call when I'm exhausted at 10 p.m. on a Tuesday?
• What would make this sustainable for a year? For five?
• Where do I want to be in a year as a person, not just as a caregiver?

Questions to ask a care navigator

If you have access to a care navigator — and most families with Medicare and a dementia diagnosis do, through GUIDE — bring this short list to your first call.

• Do we qualify for Medicare's GUIDE Program?
• What's available in our area for adult day programs, respite, and peer support?
• What legal and financial steps should we take in the next 60 days?
• How do we plan for the next stage before we are in it?
• What signs should make us reach back out sooner rather than later?

Questions to ask your loved one, while you still can

These conversations are easiest early. They get harder as the disease progresses, and at some point they may not be possible at all. You don't need to have them all at once — but it's worth starting.

• Where do you want to live as your needs change?
• Who do you trust to speak for you if you can't speak for yourself?
• What kind of medical interventions do you want — and not want?
• What rituals or routines matter most to you?
• Is there anything you want me to know now, while we have time?

“I'm so glad I asked my mom what mattered to her while she could still tell me. That conversation has shaped every decision since.”

When to get a second opinion

If the diagnosis is unclear, the proposed plan doesn't sit right, or you want another perspective from a dementia specialist, a second opinion is reasonable and usually covered by Medicare. Most clinicians welcome it — and the families who pursue it almost never regret doing so.

If you'd like help thinking through what to ask next, HōttoCare may be able to help.