Providing care for a loved one takes time and energy, no matter the diagnosis. But caregivers of people with transthyretin amyloid cardiomyopathy (also called ATTR-CM or cardiac amyloidosis) have a unique burden, as the condition can make it difficult to perform everyday tasks such as walking, bathing, driving, gripping a pen, and grocery shopping, says Maureen Geary, a nurse practitioner in the amyloidosis program at New York University Langone in New York City.
In people with ATTR-CM, proteins called amyloids build up in the heart, which stiffens the muscle over time. This can lead to symptoms such as shortness of breath, swelling in the legs, an abnormal heartbeat, and confusion or trouble thinking.
According to results from a 2023 survey, more than half of the participants reported feeling like caring for someone with untreated ATTR-CM was a burden. And the sicker the person was, the more help they required.
Moreover, because ATTR-CM is more common in older adults, it may also occur alongside the natural process of aging, says Michelle Kittleson, MD, PhD, chair of the writing group for the 2020 American Heart Association Scientific Statement on Cardiac Amyloidosis and a professor of medicine at the Smidt Heart Institute at Cedars-Sinai in Los Angeles.
It can “become all encompassing for the caregivers, and it’s hard for them to lead their own normal life,” Geary says.
If this sounds familiar, these strategies can help you care for yourself along with your loved one.
1. Encourage Your Loved One to Seek Treatment
Treating ATTR-CM as early as possible can slow disease progression, which can help people with the condition live longer. In fact, when ATTR-CM is treated with medication and monitoring, “Living with cardiac amyloidosis feels the same as living with old age,” Dr. Kittleson says.
The current treatment options on the market haven’t always been available. Right now “is the best time to be living with a condition like cardiac amyloidosis, because of the advances in early diagnosis and therapies that can slow or halt the progression of disease,” Kittleson says. If your loved one isn’t currently receiving treatment, encourage them to reconnect with their cardiologist.
2. Know You Cannot Stop the Disease
As a caregiver, you are undoubtedly dedicated to providing the best support you can to your loved one. But try not to harbor “any expectation that the quality of care you give is going to alter the natural [progression] of this condition,” Kittleson says.
As painful as it can be to accept, your loved one’s condition will get worse as time goes on. “Relieve yourself of that burden of medical responsibility,” she says. “Your job is not to change or alter the natural history of this progressive condition, but to be there as a support system for your loved one.”
3. Enlist Help
You don’t have to be the sole caregiver for someone with cardiac amyloidosis. There are several ways to find more support if you need it.
For starters, you can speak with other family members and friends and ask them to pitch in, Geary suggests. For example, maybe someone else can take your loved one to a checkup, pick up prescriptions at the pharmacy, or do the grocery shopping, she says.
You can also talk to your loved one’s care team about finding a home health aide. It’s common for these medical professionals to come to the home and spend nights with people with ATTR-CM, Geary says. This can give you peace of mind, knowing your loved one is being looked after when they need to, say, get up in the middle of the night to use the bathroom, she says. And you can get some sleep.
Also, don’t forget about the technology at your fingertips that can ease some of the burden. “What an advantage today that you have things like DoorDash, Instacart, and Amazon Prime to deliver to you,” Geary says.
4. Find Mental Health Support
It’s common for ATTR-CM caregivers to live with their own anxiety and depression as they take on more responsibilities and their loved ones become more affected by the disease, Geary says. Often, you’re also living with the knowledge that you may only have a few more years with your loved one, she adds.
If you’re navigating your own mental health concerns while taking care of someone with ATTR-CM, consider reaching out for professional support from a therapist or counselor who specializes in caregiving, chronic illness, or grief. If you’re not sure where to start, talk to your primary care doctor about the challenges you’re facing, Geary says. They may be able to refer you to the right expert, who can help you through these difficulties.
The amyloid program or center where your loved one receives treatment might also have a social worker you can connect with, Geary adds. Social workers can help by making referrals, ensuring you gain access to assistive devices, and introducing you to support groups.
Where Geary practices, they offer support groups for people with amyloidosis and their caregivers. They talk a lot about the disease and what prognosis to expect. “I think knowledge is power for a caregiver,” she says.
The Takeaway
Caregivers of people with ATTR-CM may have to help their loved one perform everyday tasks such as walking, bathing, and writing.
Ask for help: Recruit a family member, close friend, or home health aide to perform some tasks.
Seek out a support group, which may be available through the center where your loved one is being treated. You can also visit caregiver-focused websites, such as the Family Caregiver Alliance, National Alliance for Caregiving, and Caregiver Action Network.
Chung Yoon, MD, is a noninvasive cardiologist with a passion for diagnosis, prevention, intervention, and treatment of a wide range of heart and cardiovascular disorders. He enjoys clinical decision-making and providing patient care in both hospital and outpatient settings. He excels at analytical and decision-making skills and building connection and trust with patients and their families.
Sarah Klein is a Boston-based health journalist with over 15 years experience in lifestyle media. She has held staff positions at Livestrong.com, Health.com, Prevention, and Huffington Post. She is a graduate of the Arthur L. Carter Journalism Institute at New York University, and a National Academy of Sports Medicine–certified personal trainer. She moderated a panel on accessibility in fitness at SXSW in 2022, completed the National Press Foundation's 2020 Vaccine Boot Camp, and attended the Mayo Clinic's Journalist Residency in 2019.
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Ponti L et al. Burden of Untreated Transthyretin Amyloid Cardiomyopathy on Patients and Their Caregivers by Disease Severity: Results From a Multicenter, Non-interventional, Real-World Study. Frontiers in Cardiovascular Medicine. August 29, 2023.
Kittleson MM et al. Cardiac Amyloidosis: Evolving Diagnosis and Management: A Scientific Statement From the American Heart Association. Circulation. July 7, 2020.
