Going to the Doctor and Dementia – A Caregiver’s Guide

Picture of Dementia Patient and DoctorAs your loved one’s dementia or Alzheimer’s progresses, they may no longer be able to communicate effectively on their own behalf when they visit the doctor’s office. They may forget prescriptions or have trouble articulating questions and concerns. This can lead to a missed diagnosis or your loved one leaving the office without all the information they need. As a caregiver, you can act as an advocate for your loved one at the doctor’s office to help ensure that they receive the  best care possible. Here’s how to prepare for each stage of the visit.

Preparing for the Doctor’s Appointment

It is always a good idea to prepare for your loved one’s doctor appointment in advance, so you don’t get flat footed when the doctor asks about medication dosages. It’s also easy to forget important questions you want to ask when you’re put on the spot.

Make a List of Prescriptions

Many older adults take multiple medications, and not all of their doctors will have this important information. To ensure that your loved one’s doctor doesn’t prescribe something that will have a bad reaction with a current medication, make sure you provide an accurate list of all current medications and dosages. Include all vitamins and supplements your loved one is taking.

The easiest way to do this is to simply take all the prescription bottles with you to the appointment. You can also write down a list or take a picture of each label with your phone. (It’s a good idea to delete these pictures as soon as the appointment is over.)

Observe Your Loved One’s Behavior

In the weeks or days leading up to the appointment, observe your loved one’s behavior. Have you noticed changes in their personality? Are they becoming more forgetful, paranoid, or aggressive? Do you notice any physical ailments, such as difficulty climbing stairs, trouble seeing, or getting out of breath more easily than normal?

Write down these observations for discussion with the doctor and be as specific as possible.

Write Down Questions

It can be difficult to remember all of your questions on the spot, so write them down as they come to you, so you’ll have them at the ready. If you have a lot of questions, prioritize them so you can focus on the ones you want answered the most.

Review with Your Loved One

This is your loved one’s doctor appointment, so check in with them before the appointment. Ask them if they’ve noticed any changes/differences in how they feel and if they have any questions for the doctor. This will help you be on the same page when you walk into the examination room.

During the Doctor’s Appointment

Many people, especially older adults, find the doctor’s office a little intimidating. Many older adults also tend to downplay their symptoms. Some don’t want to “cause a fuss,” while others may worry about getting another diagnosis. Those with dementia or Alzheimer’s may forget their questions or become confused during the appointment, which is why it is all the more important that you communicate clearly with the doctor and keep that list of questions handy.

Discuss Treatment Goals

Dementia and Alzheimer’s are both progressive diseases, which means treatment goals will change over time. During the appointment, make sure you and the doctor talk about what the current treatment goals are.

Speak Up

Some doctors may seem harried or busy, but don’t let that stop you from speaking up. Make sure you communicate your observations, especially if it seems like your loved one’s condition is changing, or they are having issues with their medication.

Ask your questions. If something the doctor says confuses you, ask for clarification. If the doctor suggests changes to your loved one’s current treatment and/or prescribes new medication, make sure you understand what the new treatment is supposed to accomplish as well as possible dangers and side effects you should be on the look out for.

Take Notes

You aren’t going to be able to process everything you hear in the appointment, so take notes on what the doctor says. This will let you better share information with other family members and to ask follow up questions if you have them.

Alone Time

If your loved one is in the early stage of dementia or Alzheimer’s, they may wish to speak to the doctor privately. Give your loved one this time to ask personal or sensitive questions.

Finalize Follow Up

Before you leave the doctor’s office, make sure you understand if any follow-up actions are needed, for example, scheduling blood tests, seeing a specialist, or picking up a new prescription from the pharmacy.

After the Visit

Whew! Your doctor’s visit is over, but you aren’t quite finished yet. You have a lot of information, so make sure you capture it in the right way.

Debrief with Your Loved One

On the way back from the appointment, talk with your loved one about how it went. Did they have all their questions answered? Were they confused about anything? It might be worthwhile to recap the visit and to highlight any changes the doctor made to the treatment plan and the reasons behind the change.

Update Your Loved One’s Treatment Plan

It is a good idea to keep some sort of record of all your loved one’s doctor visits, medications, treatment changes, and your own observations. This can be crucial when you visit a different doctor who doesn’t have your loved one’s files or in the case of an emergency. You can create this record yourself with a simple Word doc or Excel doc or use an online service.

Take Follow-Up Actions

It’s best to make follow-up appointments, pick up medication, and perform other follow-up actions while the information is still fresh in your mind. The life of a caregiver can be hectic, so these tasks can be easily overlooked if too much time has passed.

We hope this guide to visiting the doctor with your loved one with dementia or Alzheimer’s has been helpful and will make the experience easier and more effective in the future. For more great advice on how to be a caregiver, we invite you to attend our free Caregiver Support Group each month. Members of the public are welcome!

 


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