September is World Alzheimer’s Month, a time to raise awareness and help advance research through fundraising. According to the Alzheimer’s Association, “An estimated 5.8 million Americans age 65 and older are living with Alzheimer’s dementia in 2020. Eighty percent are age 75 or older.”
If you have a loved one who was recently diagnosed, you probably have many questions. One of those may be whether it’s possible for you to speak with your loved one’s doctor.
Most of us are familiar with the Health Insurance Portability and Accountability Act (HIPAA), which sets boundaries for releasing an individual’s health information. In broad terms, the law gives patients greater control over their medical information and with whom it may be discussed. This law affects whether a family can talk to their loved one’s doctor, even when the loved one is suffering from dementia. Here’s how you can ensure you have access to the information you need to support your loved one.
The Importance of Naming a Healthcare Representative
In the early stages of Alzheimer’s, if your loved one allows you to accompany them to doctor’s appointments, permission to participate in the discussion and the exchange of information with the person’s physician is implied. The doctor may ask your loved one for verbal or written permission before releasing information to you.
In later stages, when your loved one can no longer make their own decisions, informal permission may no longer be enough. A solution is for your loved one to appoint a trusted friend or relative to serve as their healthcare representative before they become incapable of making this decision. An advance directive like this is often called a “durable power of attorney for health care” or “health care proxy.” This document names someone to make healthcare decisions if a person cannot. It also allows that person to step into the patient’s shoes with respect to confidential healthcare information and discussions. This gives the representative access to the information they need to understand the patient’s care options and make wise, informed decisions on the patient’s behalf.
What If Your Loved One Won’t Sign a Healthcare Appointment?
An Alzheimer’s Association spokesperson suggests that if your loved one won’t sign a healthcare appointment, it can be helpful to enlist the help of a trusted third party to encourage them to sign one, perhaps by explaining that it’s beneficial for all concerned. You might ask your loved one’s physician, a member of the clergy, a lawyer, a trusted friend, or an Aging Life Care professional (geriatric care manager). Bringing in a third party can help overcome family barriers that may exist and may be viewed by your loved one as having the benefit of an “expert” opinion.
The Alzheimer’s Association also suggests that if a third party is unable to help, it’s important to inform the physician. Ultimately, the physician will need to determine your loved one’s capacity to make decisions. Capacity is not always clear cut, so the unfortunate reality is that without a health appointment, there may be a time when the doctor is not at liberty to talk to you.
What About Filing For Guardianship?
Guardianship is an option when a person with Alzheimer’s reaches the point where they cannot take care of themselves, are deemed incompetent to make decisions, and haven’t completed an advance directive naming a healthcare representative. The Alzheimer’s Association notes that the process can be time-consuming, emotionally draining, and expensive, but is sometimes necessary to protect individuals with dementia who do not understand they need help. Guardianship laws differ from state to state, so if your family thinks they need to consider this, consult with an elder care attorney.