Doctor-Visit Prep

You get fifteen minutes, months apart, and you're the only witness who's seen everything. This page turns what you know into what the doctor can use. Print it, fill it in the waiting room.

First: getting them there at all

Half of doctor-visit prep is a person who says there's nothing wrong with them. That refusal is fear wearing armor, and it answers to gentleness, not evidence. The ways in, kindest first:

• Attach the visit to something they feel: the knee, the hearing, the sleep. The appointment is about that; the rest happens quietly.
• Use the free yearly wellness visit. Medicare covers it in full every 12 months, and a brief cognitive check is a routine part of it for everyone, so nobody has to request a "memory test." If the check raises questions, Medicare covers a separate, fuller visit too.
• Send your observations ahead (portal message or a note dropped at the desk): what you've seen, when it started, the sudden changes. The doctor brings it up as their own question, and you stay the ally in the room.
• Ask the front desk for help. They have seen every version of reluctance. A reminder card from the office, a call from the nurse: official voices persuade where family voices can't.
• If it's just you with no one to tag-team: the Alzheimer's Association helpline (1-800-272-3900, free, around the clock) will strategize this exact conversation with you, and your Area Agency on Aging (1-800-677-1116) knows which local providers make home visits.
• A firm no with nobody unsafe? You're allowed to let today lose. Revisit in a month through a different door. The one exception that can't wait: a sudden change over days, which is a call-the-doctor-today matter (the emergency page has the rule).

Which doctor: and how to check any of them

Most families never choose. They get whoever the referral landed on, and then wonder for years whether that was the right person. You are allowed to check, and allowed to change. Two of the checks below are free and take about ten minutes.

Who actually knows dementia. The regular doctor can start the workup and manage most of it, and a good one is worth more than a distant specialist. When you want more depth, the names to ask for are a neurologist, a geriatrician, or a geriatric psychiatrist. That last one is the specialist for the hard behavior and mood problems, and the one families least often hear about. The deepest bench in the country is an NIA-funded Alzheimer's Disease Research Center: the National Institute on Aging funds these at major medical centers, and they help with diagnosis and ongoing management, not only research. The directory is public, state by state, with a phone number for each. If your state has one, it is worth the drive at least once. If you don't know where to start, the free Alzheimer's Association helpline, 1-800-272-3900, answered around the clock, will help you find what's near you, and the resources page lists the local doors state by state.

The two free checks, on any doctor, before or after you see them:

• The license, at your state medical board. Every state runs a free lookup showing whether a doctor's license is active and whether there has been public disciplinary action. Search your state's name plus "medical board license lookup". This is the check almost nobody does and the one that catches the rare real problem.
• The board certification, at certificationmatters.org, the American Board of Medical Specialties' own free tool. It tells you what a doctor is certified in, which is the useful part. Read it precisely: a certificate issued by a private institute is not the same thing as an ABMS board certification, and this tool shows you which one you're looking at.

What to ask a doctor you're considering, in the first visit, out loud:

The answers tell you more than any credential. A doctor who sees dementia weekly, has someone to consult, and has a real path for between-visit questions will serve you better than a famous name with a six-month waiting list.

The same five questions, whoever they are. Somewhere along the way you may be offered something outside the usual track: a functional-medicine or integrative clinic, a brand-name program, a specialist who works differently. The pull is easy to understand. Conventional care often hands a family a diagnosis, a short prescription and a follow-up in six months. That can feel like being sent home to watch. Ninety minutes of someone asking about sleep and diet and stress answers a real hunger. Wanting that is not gullible. Much of what such clinics emphasize (blood pressure, sleep, hearing, movement, staying connected) is the same evidence-backed ground this site already recommends, which also means you can have that part for free.

And the part that is not established, said as plainly as the part that is. No published evidence shows that a branded protocol, a long supplement stack, or repeated specialty testing reverses or halts dementia. The best-known "reversal" program has a peer-reviewed pilot behind it, but still no peer-reviewed controlled trial (the detail, with costs and what is free about it). Hold that next to the honest status of conventional treatment, which this page states two sections down. There is no cure. The symptom drugs lose effectiveness as the disease advances. The anti-amyloid infusions slow decline in early disease, at the cost of a real risk of brain swelling.

So the useful move isn't sorting practitioners into trusted and suspect camps. It's asking everyone the same five things, the neurologist and the clinic you found online alike:

• What are you certified in, and who issued it? Not a gotcha, just a fact worth having, because the phrase "board certified" is doing different work in different offices. A certificate from a private institute or membership association is not the same thing as an ABMS board certification, and functional medicine is not among the 24 specialties ABMS certifies. That is a fact about the words on the wall, not a verdict on the person underneath them: plenty of ABMS-certified physicians also hold other training. The free tool above shows you exactly which one you're looking at.
• What will this cost over the next six months, all in? Consultations, anything you'd prescribe or sell, and repeat testing. Ask for the number in writing. This question is just as fair to a specialist practice with its own imaging as to a clinic with its own supplement shelf.
• Do you have a financial interest in what you're recommending? It runs both directions, and you can check one of them yourself: CMS Open Payments is a free federal database of what drug and device companies pay individual providers. Most of what's in there is lunches and consulting fees, not scandal, and a payment is not proof of anything. But a doctor recommending a product whose maker pays them, and a clinic selling the supplements it prescribes, are the same kind of thing, and you're entitled to see both.
• Will you write to the others treating them? Anyone who won't coordinate is asking to be your only source of truth, and that is a bad idea from any direction.
• What would make you say this isn't working, and when would we review it? A good answer exists for a supplement protocol and for donepezil alike. No answer at all is the signal, whoever is giving it.

A practitioner of any kind who takes those five without bristling has told you something good. The bristling is itself the answer.

Reasons to change doctors, none of which are rude:

• They talk only to you, never to the person with dementia. That one is disqualifying on its own.
• They say "it's just age" after a diagnosis exists.
• They won't put fifteen minutes aside for the medicine review in the next section.
• They get defensive when you ask for a second opinion.

Second opinions are ordinary medicine, not an insult, and they're usually covered; you do not need permission and you do not need to explain yourself.

Bring these three things

• The changes list: what's new or worse since last visit (below).
• Every pill and potion: prescriptions, over-the-counter, supplements. The bag itself works. Medication interactions are a top cause of sudden decline.
• Your behavior log, printed: "agitated most evenings, 4–6pm, worse after TV" is clinical gold; "she's been difficult" is not. The log now builds a one-page doctor summary in exactly that language; printing just that page is enough.

How to describe changes so they land

• Say when it started and how fast: "new in the last two weeks" (fast = investigate) vs. "slowly over six months" (slope = progression). This one distinction drives most of the visit.
• Compare to their own baseline: "She used to handle her own pills; now she double-doses" beats "her memory is bad."
• Frequency, not adjectives: "up 4 of the last 7 nights" beats "sleeping terribly."
• Say the hard parts out loud: the aggression, the wandering, your own exhaustion. Doctors can only treat what they hear, and if the person is present, hand a written note to the front desk to give the doctor: it spares everyone the humiliation of discussing it across them.

Questions worth your fifteen minutes

• Could anything on the medication list be making the confusion or behavior worse? (The names worth raising: the medicine review.)
• Could this recent change be something treatable: infection, thyroid, B12, depression, pain?
• Is there anything to treat the [sleep / agitation / anxiety], and what are the trade-offs at this stage?
• What should we expect in the next six months? What would you be planning for, in our position?
• Is it time to talk about [driving / more help at home / palliative support]? Can you write your recommendation down for the family?
• Who do we call when something happens after hours: you, urgent care, or the ER?

The medicine review nobody schedules

Of everything on this page, this is the item most likely to hand you back a better week. Some medicines commonly prescribed to older people worsen confusion, and their effects stack: three mild ones together can look exactly like the disease advancing. The list below is not a list of bad drugs, and nothing here is a reason to stop anything. It is a list of things worth asking about, because nobody reviews the whole bottle collection unless a family asks.

• Anticholinergics: the big invisible category. The one families are most surprised by is diphenhydramine, which is Benadryl and also the "PM" in nearly every PM painkiller and over-the-counter sleep aid. Bladder medicines like oxybutynin are in the same family, as are some older antidepressants, stomach and muscle relaxants. Geriatric prescribing guidelines (the AGS Beers Criteria) advise avoiding these in people with dementia, and specifically flag the cumulative burden when several are taken together.
• Sleeping pills and benzodiazepines (lorazepam, diazepam, alprazolam and relatives). The same guidelines advise avoiding them in dementia and in anyone at risk of delirium, because they can cause or deepen exactly the confusion they get prescribed around. If one is in use, the question is the plan: lowest dose, shortest time, what replaces it.
• Antipsychotics for behavior (risperidone, quetiapine, olanzapine and others). These carry an FDA boxed warning: in trials of older adults with dementia, deaths ran roughly 1.6 to 1.7 times the rate on placebo, mostly cardiac or from infection. Guidelines say to use them only when non-drug approaches have failed or aren't possible and someone is at risk of real harm, then at the lowest dose for the shortest time, alongside the non-drug work, with a date to reassess. Sometimes that threshold is genuinely met and the drug is the kind thing. Even then, ask what the review date is.

How to ask for the review. Bring the bag of bottles (the "brown-bag review"), and say it in one sentence:

Your pharmacist can do this too, often faster and at no charge, and they see every prescriber's list at once, which the doctors usually don't. If your person has Medicare Part D and several chronic conditions, ask the plan whether they qualify for Medication Therapy Management: a free, formal version of exactly this review. Then bring what you learn back to the prescriber, because only the prescriber changes the prescription.

One thing to raise in the same conversation, from the other direction: untreated pain also looks like agitation. Chapter 4 covers the behavior-is-a-message detective work, and scheduled plain acetaminophen is often the question worth asking before anything sedating.

The dementia medicines themselves: what they do and don't

The section above is about medicines that may be making things worse. This one is about the drugs offered for the dementia, because families are handed a prescription at a fifteen-minute appointment and rarely told plainly what to expect. Start with the sentence the National Institute on Aging puts at the top of its own page: there is currently no intervention that cures Alzheimer's. Everything below is worth understanding anyway, and understanding it is what stops both false hope and the quiet despair of thinking nothing can be done.

Two different kinds of drug get confused constantly, so separate them first.

1. The symptom medicines, the ones most families are actually offered. Cholinesterase inhibitors (donepezil, rivastigmine, galantamine) slow the breakdown of acetylcholine, a brain chemical used in memory and thinking; they're prescribed across mild, moderate and, for some, severe stages. Memantine works differently, on glutamate, and is prescribed for moderate to severe disease. The two types can be taken together.

• What to honestly expect: these ease or steady some symptoms for a while. They do not stop the disease. NIA's own example is the most useful one a caregiver will hear, because it's measured in daily life rather than test scores: memantine may help someone in the later stages keep using the bathroom independently for several more months. That is a real gift to two people, and it is a different claim from "improvement."
• They fade, and that isn't your failure or theirs. As the disease advances the brain makes less acetylcholine, so these medicines lose effectiveness over time. Switching between the cholinesterase inhibitors may not change much, though one person can genuinely tolerate or respond to one better than another. Worth asking about; not worth despair.
• Side effects to actually watch for: nausea, vomiting, diarrhea, loss of appetite and weight, headache, dizziness, confusion, and falls. Doses are usually started low and raised slowly for exactly this reason. Anything new and unusual gets reported to the prescriber rather than waited out.

2. The anti-amyloid infusions (lecanemab, donanemab), which are the ones in the news. These target the amyloid protein itself, and they are only for mild cognitive impairment or mild Alzheimer's. So for most families reading this site they are not on the table, and being told that early saves a painful chase. What they do is slow the rate of decline in early disease. They do not reverse it and they do not restore what is gone.

• They come with real conditions. Amyloid has to be confirmed first by PET scan or spinal fluid; the FDA encourages testing for the ApoE ε4 gene beforehand because carriers face higher risk; and treatment means regular MRI monitoring.
• The risk with a name: ARIA, amyloid-related imaging abnormalities, meaning swelling in the brain and sometimes small bleeds. The Alzheimer's Association's framing is the fair one: it is common, it usually causes no symptoms and usually settles, and it can also be serious. NIA adds that in rare cases the side effects are life-threatening. Both of those things are true at once, which is exactly why this is a conversation and not a formality.
• Money: coverage is conditional. Medicare Part B pays part of the cost for people who meet the criteria; ask before starting, not after.

One overlap worth naming, because it looks like a contradiction with the section above: brexpiprazole, an atypical antipsychotic, is FDA-approved specifically for agitation in Alzheimer's. Approved does not mean first, and its listed side effects include stroke. The order the rest of this site teaches still holds: hunt the cause (pain, infection, a full bladder, constipation, the room, the hour), then the non-drug moves, then this conversation with a doctor who knows the whole picture.

The three questions that make any of this useful, whichever drug is on the table:

A prescription that nobody ever re-evaluates is how people end up on drugs long past the point of benefit. Put the answer on your changes list, and put the review date in the calendar the day it starts.

Your changes list

Cut the phone tag: five calls that pay for themselves forever

None of these are urgent. All five save you hours of hold music later. Make them once and stop thinking about them.

• Sync every refill to one pickup date. Ask any big pharmacy to line up all your prescriptions on a single monthly pickup. It's free, and it ends the pharmacy-run treadmill. CVS calls it ScriptSync; Walgreens calls it Save a Trip Refills and enrolls by phone at 1-833-728-3874.
• Ask for multi-dose blister packaging. The pharmacy pre-sorts every pill into dated, timed tear-off packets: no more "which pill, which day." CVS offers multi-dose packaging at no charge and ships it to the door (call 1-800-753-0596); Amazon Pharmacy's PillPack does the same. Availability varies by location, so just ask: "Do you offer multi-dose packaging, or who near us does?"
• Get your own patient-portal login. Proxy access to labs, appointments, and messages beats phone tag with the front desk. If they can still consent, in MyChart it's Share My Record → Friends and Family Access. If they can't consent anymore, ask medical records for "diminished capacity proxy access" and bring the diagnosis letter. It's a standard process most families never hear about.
• Know the records deadline when an office stalls. Federal law (HIPAA Right of Access) gives them 30 days to act on a written records request: one 30-day extension allowed with written notice, and fees limited to actual costs. The sentence to say: "I'm making a written request under the HIPAA Right of Access. When within the 30 days should I expect it?"
• Book the visit so it works for you. Say "dementia" when you book and ask for a longer slot at their best hour (usually morning). Lead with your single biggest concern first, not chronologically. Hand over the one-page med list instead of reciting it.