Doctor-Visit Prep

You get fifteen minutes, months apart, and you are the only witness to everything. Print this page and fill it in the waiting room.

First: getting them there at all

Refusal is often fear, and it answers to gentleness, not evidence. The ways in, kindest first:

• Make the visit about something they feel. (The knee, the hearing, the sleep. The rest happens quietly.)
• Use the free yearly wellness visit. (Medicare covers it in full every 12 months. It includes a brief cognitive check for everyone, so nobody asks for a "memory test." If that raises questions, Medicare covers a separate, fuller visit too.)
• Send your observations ahead, by portal message or a note at the desk. (The doctor raises it as their own question, and you stay the ally in the room.)
• Ask the front desk for help. (A reminder card from the office or a call from the nurse persuades where family voices can't.)
• If it's just you, the free Alzheimer's Association helpline (1-800-272-3900, around the clock) will plan this conversation with you. The Eldercare Locator (1-800-677-1116) connects you to your Area Agency on Aging, which knows which local providers make home visits.
• A firm no, and nobody unsafe? Let today go, and try a different door in a month. (Except a sudden change over days: call the doctor today. See the emergency page.)

Which doctor, and how to check them

Most families get whoever the referral landed on. You are allowed to check, and to change. The two checks below are free and take about ten minutes.

Who knows dementia. The regular doctor can start the workup and manage most of it. For more depth, ask for a neurologist, a geriatrician, or a geriatric psychiatrist, the specialist for hard behavior and mood problems that families least often hear about. The deepest bench is an NIA-funded Alzheimer's Disease Research Center, at major medical centers, which helps with diagnosis and ongoing care, not only research. The directory is public, state by state, with a phone number for each. Not sure where to start? The resources page lists the local doors state by state.

The two checks, on any doctor:

• The license, at your state medical board. (A free lookup shows whether the license is active and any public disciplinary action. Search your state's name plus "medical board license lookup".)
• The board certification, at certificationmatters.org. (The American Board of Medical Specialties' own free tool shows what a doctor is certified in.)

Ask a doctor you're considering:

A doctor who sees dementia weekly, has someone to consult and answers between visits beats a famous name with a six-month wait.

Clinics outside the usual track. You may be offered a functional-medicine or integrative clinic, or a brand-name program. Conventional care often hands a family a diagnosis, a short prescription and a follow-up in six months. Ninety minutes about sleep, diet and stress answers a real hunger. Much of what such clinics emphasize (blood pressure, sleep, hearing, movement, staying connected) is the evidence-backed ground this site already recommends, free.

Where the evidence stands. Two randomized trials in mild cognitive impairment or early dementia found an all-round programme did better than usual care: Ornish (2024) and ReCODE (2025, the plain guide). Large prevention trials (FINGER, US POINTER) found the same for thinking in older adults at risk. Conventional treatment has its own limits, starting with no cure.

So ask everyone the same five things, the neurologist and the clinic you found online alike:

• What are you certified in, and who issued it? (A certificate from a private institute or membership association is not an ABMS board certification, and functional medicine is not among the 24 ABMS member boards. Many ABMS-certified physicians hold other training too.)
• What will this cost over the next six months, all in, in writing? (Visits, anything prescribed or sold, repeat testing. As fair to a 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? (CMS Open Payments, a free federal database, shows what drug and device companies pay individual providers. Most is lunches and consulting fees, and a payment proves nothing. A clinic selling the supplements it prescribes is the same kind of thing.)
• Will you write to the others treating them? (Anyone who won't coordinate is asking to be your only source of truth.)
• 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 is the signal.)

Anyone who takes those five without bristling has told you something good.

Reasons to change doctors:

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

Second opinions are ordinary medicine, and usually covered. You need no permission and no explanation.

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's one-page doctor summary, printed. "Agitated most evenings, 4–6pm, worse after TV" is what a doctor can use; "she's been difficult" is not.

How to describe changes so they land

• Say when it started and how fast. "New in the last two weeks" means investigate. "Slowly over six months" means progression.
• 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.)
• Person in the room? Give the front desk a note for the doctor. (It spares everyone discussing it across them.)

Questions worth your fifteen minutes

• Could anything on the medication list be making the confusion or behavior worse? (See 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

Some medicines common in older people worsen confusion, and their effects stack: three mild ones together can look exactly like the disease advancing. Nobody reviews the whole bottle collection unless a family asks. The list below is things worth asking about, not bad drugs.

• Anticholinergics. The one that surprises families 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 dementia, and flag the cumulative burden of several 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, since they can cause or deepen confusion. If one is in use, ask the plan: lowest dose, shortest time, what replaces it.
• Antipsychotics for behavior (risperidone, quetiapine, olanzapine and others). They carry an FDA boxed warning: in trials in 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: the lowest dose for the shortest time, with the non-drug work and a date to reassess. Sometimes that is the kind choice. Even then, ask the review date.

How to ask. Bring the bag of bottles (the "brown-bag review") and say:

Your pharmacist can do this too, often faster and at no charge, and sees every prescriber's list at once. On Medicare Part D with several chronic conditions? Ask the plan about Medication Therapy Management, a free, formal version of this review. Then take what you learn to the prescriber, who alone changes the prescription.

Raise untreated pain in the same conversation: it also looks like agitation. Scheduled plain acetaminophen is often the question worth asking before anything sedating. Chapter 4 covers the detective work.

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

The National Institute on Aging's own page starts here: there is currently no intervention that cures Alzheimer's. Knowing what each drug can do guards against false hope, and against the quiet despair of thinking nothing can be done.

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

• What to expect: they ease or steady some symptoms for a while. They do not stop the disease. NIA's example comes from daily life: 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.
• They fade, and that isn't your failure or theirs. (As the disease advances the brain makes less acetylcholine.) Switching between the cholinesterase inhibitors may not change much, though a person can tolerate or respond to one better than another. Worth asking about.
• Side effects to watch for: nausea, vomiting, diarrhea, loss of appetite and weight, headache, dizziness, confusion, and falls. (Doses usually start low and rise slowly for this reason.) Report anything new to the prescriber.

2. The anti-amyloid infusions (lecanemab, donanemab), the ones in the news. They target amyloid, and are only for mild cognitive impairment or mild Alzheimer's. For most families reading this site they are not on the table. They slow the rate of decline in early disease. They do not reverse it or restore what is gone.

• Real conditions: amyloid has to be confirmed first, usually by PET scan or spinal fluid (a blood test cleared in May 2025 can help, but not on its own). The FDA encourages testing for the ApoE ε4 gene beforehand, because carriers face higher risk. Treatment means regular MRI monitoring.
• The risk: ARIA, amyloid-related imaging abnormalities, meaning swelling in the brain and sometimes small bleeds. The Alzheimer's Association says it is common, usually causes no symptoms and usually settles, and can also be serious. NIA adds that in rare cases the side effects are life-threatening.
• Money: Medicare Part B pays part of the cost for people who meet the criteria. Ask before starting.

One overlap with the section above: brexpiprazole, an atypical antipsychotic, is FDA-approved for agitation in Alzheimer's. Approved does not mean first, and its side effects include stroke. Hunt the cause first (pain, infection, a full bladder, constipation, the room, the hour), then try the non-drug moves.

Three questions for whichever drug is on the table:

Put the answers on your changes list, and the review date in the calendar the day it starts. (A prescription nobody re-evaluates runs long past its benefit.)

Your changes list

Cut the phone tag: five calls to make once

• Sync every refill to one pickup date. (Free at any big pharmacy. 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. (Every pill pre-sorted into dated, timed tear-off packets. CVS offers it at no charge and ships it to the door, 1-800-753-0596. Amazon Pharmacy's PillPack does the same.) Availability varies, so 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.) If they can still consent, in MyChart it's Share My Record → Friends and Family Access. If they can't, ask medical records for "diminished capacity proxy access" and bring the diagnosis letter.
• Office stalling on records? Name the deadline. (Federal law, the HIPAA Right of Access, gives them 30 days to act on a written request. One 30-day extension is allowed with written notice, and fees are limited to actual costs.) 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 biggest concern. Hand over the one-page med list instead of reciting it.