ATTR amyloidosis caregiver resources and support

People with ATTR amyloidosis may rely on caregivers for multiple forms of support. Caregivers may help with practical needs, such as accompanying the person to medical appointments and managing health insurance, and may also provide emotional support.

There are two main types of ATTR amyloidosis: wild-type and hereditary or familial. A person may experience different symptoms depending on which type they have.

Being a caregiver can be a rewarding experience in many ways, but it can also be exhausting. It is important that caregivers understand the effects caregiving may have on them so they can reduce their chances of experiencing mental, emotional, and physical burnout.

A person’s symptoms will vary depending on the type of ATTR amyloidosis they have. Here are some common symptoms of each type:

Caregiving can be a challenging role that may require an around-the-clock commitment, leaving some people with little time for themselves.

Caring for someone informally (that is, when caregiving is not part of a person’s job) can increase the risk of physical and emotional exhaustion, which people often refer to as “burnout.”

According to a report from the National Alliance for Caregiving and the AARP, 63 million adults in the United States were caregivers for adult or child family members with a medical condition or disability at some time in 2025.

This report highlights the large number of people who may be at risk of experiencing caregiver burnout and the importance of understanding its causes.

These factors, among others, can cause a person to feel unhappy, self-critical, and low on energy. If a person does not address these feelings, they may become serious symptoms of caregiver burnout.

Caregivers can look to the care recipient’s healthcare team for support in many aspects of care.

However, one of the most important aspects of caregiving is obtaining the care recipient’s permission to manage their medical needs, including permission to speak with their healthcare team independently if necessary.

In these cases, a caregiver may need to obtain healthcare power of attorney.

A healthcare power of attorney, also known as a healthcare proxy, is an agreement that allows a specific person or organization to discuss another person’s medical needs and, in some cases, make healthcare decisions on their behalf. A person can appoint anyone as their healthcare power of attorney, but it should be someone they trust.

A care recipient must complete a healthcare power of attorney form, which can vary by state. In most cases, they must get the form notarized. Most hospitals and care facilities also have their own authorization forms for the care recipient to complete, which grant the caregiver official permission to manage their medical care within the facility.

Once power of attorney is in place, the care recipient’s healthcare team should be able to provide the caregiver with full care instructions, discuss medication management, provide access to medical reports, and give any other information that may allow them to provide necessary care.

Various support networks are available to caregivers of people with ATTR amyloidosis and other conditions, including:

Caregivers may have difficulty finding time for themselves, but it is important that they try.

Support groups and online communities are available for caregivers, including those who care for someone with ATTR amyloidosis. Caregivers may also be able to access financial assistance.

Self-care measures such as prioritizing emotional and social well-being, eating well-balanced meals, and engaging in enjoyable activities may help people manage stress related to caregiving.