How to prepare for a doctor's appointment with a parent who has dementia

When and how to book

The National Institute on Aging (NIA) suggests booking at the time of day when the person is at their best and when the office is not very crowded. The Alzheimer's Association makes a similar point in its advice on sleep and sundowning, recommending that doctor appointments be scheduled in the morning or early afternoon, when a person living with dementia tends to be more alert.

Tell the office before the visit. The NIA advises letting the staff know that the person has Alzheimer's and asking them for help to make the visit go smoothly. Alzheimer's Society, the UK dementia charity, suggests asking for a longer appointment, or a double appointment, so the person does not feel rushed, and asking for the quietest time of day or a telephone appointment if the waiting room is distressing.

Continuity helps too. Alzheimer's Society notes that you can ask to see the same GP where possible, so your parent sees someone they already have a relationship with.

Make sure the doctor can talk to you

Health privacy laws mean the practice needs your parent's permission before it discusses their care with you. According to the NIA, if you go to the appointment together, your parent can simply tell the doctor that they agree to have you there, and that it is fine to share information with you later. To see their records or speak with a provider when they are not present, you need legal permission.

Most offices have a consent form for this, sometimes called a HIPAA release or HIPAA waiver, the NIA explains. Ask your parent to list your name and contact details on it at each provider's office. In some cases a medical power of attorney makes sense, and every provider should then have a copy. In the UK, Alzheimer's Society suggests asking the GP to note you as the main carer and to copy you into important information, such as appointment dates, where appropriate.

What to bring

The NIA's checklist covers the practical items: insurance cards, the names and phone numbers of other doctors your parent sees, and medical records if this doctor does not already have them. Check that glasses or contact lenses come along, and that a hearing aid is working and being worn.

The item that matters most is the medication list. The NIA recommends a list with the name, dosage and schedule of every medicine, vitamin, herbal remedy, over-the-counter drug and dietary supplement, including those prescribed by other doctors, and offers a worksheet called Managing Medications and Supplements for keeping track. The Alzheimer's Association suggests bringing either the medication containers themselves or a complete list including dosages, because a person living with dementia may be under the care of more than one doctor.

The NIA also suggests taking something your parent likes to eat or drink, and materials or activities they enjoy.

Write down what has changed

The doctor will want to know what has changed since the last visit, and answering from memory in the moment is hard. The Alzheimer's Association advises making notes about changes in behaviors, routines or eating habits, and being as specific as you can: when does it happen, how often, and does something seem to trigger it? Alzheimer's Society's guidance on the annual dementia review says the GP will ask about new symptoms since the last appointment and go over medications, so notes on both are worth having.

Keep the summary short. Alzheimer's Society suggests writing all recent changes or concerns as a list on a small card, such as a postcard or record card, because the GP can read it and type straight from it into their notes, which leaves more time to discuss how to help. It also suggests writing or emailing the GP with a list of your concerns before the appointment.

Then list your questions, most important first. The Alzheimer's Association notes that many people report forgetting to ask the doctor all of their questions and recommends writing them down beforehand. The NIA suggests including questions that your parent or other caregivers want raised.

During and after the visit

Speak with your parent, not around them. Alzheimer's Society says it is important not to talk to the doctor over the person's head as though they are not there, and the NIA suggests letting the older adult answer the doctor's questions unless you have been asked to. If you need to say something that would upset your parent, Alzheimer's Society recommends making a separate appointment to talk to the doctor on your own. At the end of a visit, it suggests offering to leave the room so your parent can speak with the doctor alone.

Take notes. The NIA recommends writing down what the doctor recommends, so you can both remember it and share it with other caregivers later. Alzheimer's Society suggests noting any medical terms used and any changes to medications. The Alzheimer's Association recommends asking the doctor to recap the most important points before you leave, then updating your records with test results, medication changes and follow-up steps such as the next appointment.

Common mistakes to avoid

An incomplete medication list. Vitamins, supplements, over-the-counter drugs and prescriptions from other doctors are easy to leave off. The NIA's list names every one of them for that reason.

Relying on memory for the last few weeks. Notes written at the time are more reliable than a reconstruction in the waiting room. If you keep a daily log, CarePage's weekly summary puts the last seven days of meals, medications given, bowel movements, sleep, mood, pain scores and notes on one page that you can print or share as a PDF, which can serve as that short written list of changes.

Raising hard topics in front of your parent. Book a separate appointment for those conversations instead, as Alzheimer's Society suggests, and keep the shared visit focused on your parent.

This guide summarizes published guidance from the National Institute on Aging, the Alzheimer's Association and Alzheimer's Society. It is general information, not medical or legal advice. Ask the practice about its own consent forms, and talk to the doctor about any health concern.

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