Caring for Someone With ATTR Amyloidosis

Caring for a loved one with a chronic condition is a big job. It can be rewarding, but it is also demanding. This is very true for caregivers of people with ATTR amyloidosis.

ATTR amyloidosis is a rare disease. It causes a protein called amyloid to build up in the body. This buildup can harm organs such as the heart and nerves. People with this condition will need medical treatment – through medication, lifestyle changes, and potentially an organ transplant – to help stop the disease from progressing.¹

Getting prepared: What’s next?

Your loved one has been diagnosed with ATTR amyloidosis. You may feel overwhelmed. Taking small steps can help you feel more in control.^1-3

First, learn about the condition. ATTR amyloidosis affects people in different ways. Ask the doctor what symptoms to expect. Learn about treatment options. Good information helps you make good decisions.^1,2

Next, get organized. Keep a file with all medical information. This includes doctor names and phone numbers. It also includes lists of drugs and appointments. A shared calendar can be a good way to track these details.²

Build a support team. This includes the medical team. It also includes family and friends. Do not be afraid to ask for help. People often want to help but do not know how. Make a list of small tasks others can do. This could be picking up groceries or driving to an appointment.^2,3

Think about legal and financial plans. This can be hard to talk about. But it is important. You may need to help manage finances or make medical decisions. Talking about this early makes it easier later.^2,4

Challenges of caring for someone with ATTR amyloidosis

Caregiving can bring many challenges. It is okay to admit this. The tasks of caregiving can be physical. You may need to help your loved one with daily tasks like bathing, dressing, or moving around.^1,3,5

ATTR amyloidosis symptoms can change. This uncertainty is hard. You may feel worried about the future. You might also feel sad or frustrated. These feelings are normal.^3,5

The disease can also create financial stress. There are costs for treatments and appointments. Your loved one may not be able to work. You may have to cut back your own work hours. This adds pressure to the family.^1,4

Many caregivers feel isolated. You may spend so much time on caregiving that you lose touch with friends. It can feel like no one understands what you are going through.^1,3-5

Coping with caregiving and how to prevent caregiver burnout

When you feel stressed and tired all the time, it may be caregiver burnout. Burnout is a deep feeling of exhaustion. It can make you feel empty and unable to cope.³

You must take care of yourself to take care of someone else. This is not selfish. It is necessary. Here are tips to prevent burnout:⁵

• Ask for and accept help. Make a list of small tasks others can do. This could be sitting with your loved one for an hour so you can rest.
• Take breaks. You need time off. This is called respite care. Ask a family member or friend to step in. Or look for professional respite services.
• Stay healthy. Try to eat healthy meals. Get enough sleep. Find time for a short walk. Even 10 minutes of exercise can help.
• Connect with others. Talk to a friend you trust. Join a support group. Talking to other caregivers can make you feel less alone.
• Watch for signs of depression. If you feel hopeless or sad for many weeks, talk to your doctor. You may need professional help. Your mental health is important.

Resources for the caregiver community

You do not have to do this alone. Many resources are available to help caregivers of those with ATTR amyloidosis.³

Support groups are a great place to start. You can find groups online or in person. The Amyloidosis Research Consortium has information on support groups. Or you can join one of our patient and caregiver forums. Talking with people in the same situation helps.¹

Nonprofit organizations offer education and help. The Amyloidosis Foundation has fact sheets and guides on caregiving. The National Institute on Aging has good information on all aspects of caregiving.⁶

You can also find financial help. Some programs help pay for medications. Others may help pay for respite care. Ask a hospital social worker about resources that might be available to you in your area.^4,6

Reach out for help

Being a caregiver for someone with ATTR amyloidosis is a journey. It has many ups and downs. It is important to prepare for the road ahead. Know the challenges. But also know how to care for yourself. Remember to ask for help. Use the resources available to you. You are a vital part of your loved one's care team.