What You Need to Know About ATTR-CM When You’re an Older Adult

ATTR-CM can be a life-changing diagnosis, and if you’re an older adult, it can have an especially large impact on your quality of life.

According to Ajay Vallakati, MBBS, a board-certified internal medicine physician specializing in advanced heart failure at The Ohio State University Wexner Medical Center in Columbus, Ohio, common symptoms of ATTR-CM that mimic typical signs of aging include:

• Unexplained fatigue
• Lightheadedness or dizziness when standing up (orthostatic hypotension)
• Shortness of breath, particularly during exercise
• Leg swelling (edema)

Seek medical attention if these symptoms appear, worsen, or limit your daily activities. Also watch for shortness of breath during sleep or while at rest, swelling in the abdomen, heart palpitations or irregular heartbeat, or fainting episodes, says Dr. Vallakati. These symptoms could be signs that your treatment needs to be reevaluated by your care team.

Fortunately, these challenges can often be managed with a supervised exercise program, such as those offered through cardiac rehabilitation centers or with physical therapy offered at home, says Vallakati. A combination of resistance training and aerobic exercise strengthens the muscles you rely on to perform daily tasks and trains your heart to pump more efficiently, helping improve your functional abilities.

Beyond exercise, assistive devices can also play an important role. “Assistive devices can be very helpful for people with ATTR-CM by reducing physical strain and improving safety,” says Vallakati. Mobility aids such as canes and walkers can be helpful for standing up, sitting down, and walking. Other tools, such as grab bars, shower chairs, raised toilet seats, and adjustable recliners, can make daily routines easier and more comfortable, he adds.

Many older adults also benefit from vitamin D and calcium supplementation, as bone loss (osteopenia) is common in older adults regardless of ATTR-CM, says Vallakati. Discuss supplements with your healthcare provider before adding them to your wellness regimen.

Additionally, consider using meal delivery services when you’re feeling fatigued and preparing meals in batches when you have more energy.

According to Vallakati, medications that may need to be avoided or adjusted include:

• Alpha-blockers
• Angiotensin-converting enzyme inhibitors
• Angiotensin II receptor blockers
• Beta-blockers 
• Calcium channel blockers
• Diuretics
• Nonsteroidal anti-inflammatory drugs

These medications are commonly used to treat conditions like high blood pressure, heart failure, prostate enlargement, and arthritis.

Bring a list of all your current medications, including over-the-counter drugs and supplements, to each medical appointment. Ask your doctor whether any of the medicines on your list may be contributing to symptoms such as fatigue, dizziness, or shortness of breath.

“If a medication is deemed essential, patients should discuss potential alternatives with their doctors,” says Vallakati. Don’t stop taking prescribed medications without consulting your doctor first.

Despite these advances, it’s important for older adults with ATTR-CM to have a “goals of care” conversation with their family members and healthcare team. “ATTR-CM carries a worse prognosis than usual heart failure,” says Ni. “Therefore, it’s important to establish expectations for how you’d like to lead your life.” Some people may prefer to prioritize symptom relief, whereas others may want to focus on prolonging life.

Discuss your preferences with your loved ones and healthcare team now in case you’re unable to make decisions for yourself later. “This is where completing an advanced directive and dedicating someone to be your alternate medical decision-maker, or durable power of attorney, is very important,” says Ni.

Caregivers can support their loved ones in several important ways. They can help them manage medications and keep track of appointments, encourage discussions with cardiologists about newer medication options that may slow disease progression, and handle daily tasks such as picking up prescriptions, grocery shopping, and preparing meals. Caregivers can also provide emotional support by accompanying their loved one to appointments, helping them stay connected with friends, and listening to their concerns.

• Transthyretin amyloidosis cardiomyopathy is a rare but serious heart disease in older adults, with symptoms that often overlap with normal signs of aging.
• ATTR-CM management requires a multidisciplinary team of providers, and it involves proactively addressing frailty and loss of mobility and balance, often through supervised exercise such as cardiac rehabilitation and the use of assistive devices.
• Older adults with ATTR-CM should maintain a nutritious diet and carefully balance their sodium and fluid intake, while also consulting their healthcare team when medications they’re taking may be worsening symptoms like dizziness and fatigue.
• Given the disease’s prognosis, which can be improved by newer treatments like TTR silencers and stabilizers, it’s vital for older adults with ATTR-CM to prioritize their quality of life and mental health, as well as to establish “goals of care” and complete advanced directives with their loved ones and healthcare team.