Effective communication with your doctor is important for you and your family when someone you love suffers from early-onset dementia or Alzheimer's disease. Here are some tips for having the most effective doctor's appointments.
Get Permission in Writing
While your parent can still give consent, complete a healthcare power of attorney (POA), and HIPAA release form. Doctor's offices continue to improve confidentiality practices to avoid lawsuits. The physician will require a release form to be signed by your parent, which gives the provider permission to speak with you directly about your parent's health conditions. If you have been named the medical POA, you are able to be involved in treatment decisions regarding your loved one. Having a healthcare POA in place does not mean that your parent loses decision making power while they are still competent to do so, but ensures that their best interests are honored once their mental capacity decreases.
Let Them Be In Charge If They Are Able
Your loved one wants to be in charge of their health as long as they can. When they feel like they are losing control of their independence, a common defense mechanism that these patients use is: "It's my doctor and my appointment. I can do it on my own." In this case, try to position yourself as a partner (instead of the overseer, or dictator) of your elderly parent's health. The key is try to get your loved one to view you as a member of the health care team, rather than someone who is making them feel incompetent.
Prepare for the Appointment Together
Make a list of questions or concerns that you want to ask the doctor, so you do not forget anything when you are at the office. Using a cooperative approach to work with your loved one and prepare for the appointment will probably work better than handing them a list of questions without asking for their input.
It is best to make a list of your own observations of changes in their behavior and actions. If possible, choose a time when they seem receptive to give them the opportunity to share their thoughts about this concern. This can keep them from feeling interrogated and becoming defensive.
Have Someone Accompany Them
If you cannot go with them, find someone who can. A person with dementia or Alzheimer's may tend to forget important information after the appointment. Due to nervousness during the appointment, or the nature of the the disease itself, your loved one might promptly forget everything that the doctor told them.
If you do not understand something while you are at the appointment, ask questions until you do. Do not be afraid to speak up and share your point of view. If you were unable to attend the appointment, and you have questions, follow up with the doctor directly.
Ask the Doctor To Write Things Down
Get the doctor to write everything down and then duplicate it. This proves helpful in keeping the family informed, ensuring important information is not omitted, and providing other doctors with comprehensive records of your parent's health history.
Most health care providers have digital records programs that are integrated within their healthcare system. Ask for a printout of the physician's notes for the visit. Sometimes just having the proper names for conditions and prescriptions can assist you in conducting a little of your own research to broaden your understanding of what is going on or what to expect from a certain prescription or treatment process.
Communicating with the Doctor Ahead of Time
People with Alzheimer's or dementia sometimes can become masters of disguise in the early and middle stages of the disease, particularly during doctor's appointments. Will your loved one seem coherent and "normal" and convince the doctor that everything is fine? With today’s changing health systems, we do not always see the same providers regularly. Be sure to let the doctor's office know ahead of time about your parent's tendency to cover up or sugar coat the truth. This frustrating behavior is common for many reasons, but perhaps the main concern of your aging loved one is their fear of losing their freedoms and independence, therefore they withhold certain thoughts or observations about their own behaviors.
Doctors are a critical member of the support structure that we need in caring for someone with Alzheimer's. To be successful, you may need to figure out how to become an accepted partner in your loved one's medical health. Develop processes so that you and all attending physicians and care providers can stay in the loop, and provide your loved one with as much control in the decision-making process for as long as possible. By taking a team approach instead of just taking over, your loved one will be more likely to work with you to achieve their health goals.