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How Alzheimer’s Caregivers Can Be Effective Advocates

Sarah Stevenson
By Sarah StevensonJuly 23, 2013
Family Caregivers Often Provide Medical Care

When a loved one suffers from Alzheimer’s disease, communication can present challenges when it comes to handling medical visits and emergencies. Read our tips to help make the process easier.

Family Caregivers Often Provide Medical CareAdvocating for our loved ones with Alzheimer’s is one of the most important roles a caregiver has, whether it’s a routine medical visit or an emergency situation. That role can encompass duties such as assisting with communication, mediating between family and medical professionals, and responding to sudden disasters—and, of course, making sure the person with dementia remains calm and comfortable.

Handling Routine Medical Visits

During an ordinary medical visit, there are a number of things the Alzheimer’s caregiver can do to make the appointment go smoothly and facilitate communication with not just the doctor but the patient.

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  • Schedule the appointment wisely. The Mayo Clinic‘s advice is to schedule doctor’s appointments during the best time of day for your loved one—when he or she is most lucid—and to try for a time when the office isn’t as crowded. Letting the staff know in advance that an Alzheimer’s patient is coming may also be helpful.
  • Make sure your loved one is comfortable with the situation. Be positive about the appointment, perhaps bringing along snacks, water, or an activity that your loved one enjoys. Another option: “Have a friend or another family member go with you on the trip, so that one of you can be with the person while the other speaks with the doctor,” advises MedicineNet.
  • Be prepared for the visit. This may seem obvious, but it can’t be emphasized enough: bring all the information you need to your loved one’s appointment. A critical part of being their advocate is making sure the doctor has their medical history, lists of medications and supplements, and any changes in behavior or habits you might have noticed. The Alzheimer’s Association also recommends writing down any questions or concerns you might have beforehand, and bringing the list with you.
  • Ask questions and take notes. The doctor is there to help, so make sure you ask for clarification if you don’t understand something—and remember to ask about treatment goals and advance planning. Bring a note pad or recording device so you can jot down the important information. Don’t be afraid to make your concerns heard.

Where to Begin in an Emergency Situation

There are, unfortunately, those times when we aren’t blessed with the luxury of planning ahead. That’s why it’s critical to have an emergency checklist and procedures in place ahead of time in case of disaster. Besides the above tips, there are a few additional things to keep in mind when assisting your loved one in an emergency, whether it’s coping with a disaster or an unexpected trip to the hospital:

  • Stay calm and positive. Communicating with your loved one will be much easier if you are not frantic—especially since an emergency situation can be frightening and confusing for someone with dementia. They may pick up on your distress and that can make it more difficult to move them to a safe location.
  • Be patient. It can take a while for someone with Alzheimer’s to process information, so give them some time to respond. Memory problems may also mean that they ask you the same questions repeatedly about the disaster or emergency situation. Be patient with doctors, too—in an emergency, they may prefer to complete their evaluations before giving you a full debriefing.
  • Stay focused on your loved one. Getting them to safety or medical treatment is the priority, so if you think your family member would be disturbed by seeing you gather belongings or paperwork, do that out of their sight or have someone else to help. Above all, the Alzheimer’s Foundation stresses, you’ll want to stay with your loved one to provide a sense of support and safety, keep them oriented, and provide necessary information to medical professionals.

Being an Effective Advocate at the Doctor

Communicating effectively with both the patient and the doctor can be a challenging task, but it’s not impossible. The Alzheimer’s Association provides a list of suggestions for communicating with someone who has dementia, and we’ve also compiled a list of 10 communication tips, all of which can be helpful when dealing with a medical visit. The Mayo Clinic has a special suggestion for seating arrangements when talking with the doctor: “If your loved one sits next to the doctor and you sit beyond, the doctor can address questions directly to your loved one — and you can nod your head to confirm or refute your loved one’s responses.”

What’s the most helpful advice you’ve ever gotten for handling medical visits? Please feel free to share your tips for caregivers in the comments below.

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Sarah Stevenson
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Sarah Stevenson

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