Supporting someone with ATTR-CM

Caregiver support

Transthyretin amyloid cardiomyopathy (ATTR-CM) can affect different aspects of a person’s everyday life, which means that providing care may take time, energy, and additional responsibility. However, it is important to prioritise caring for yourself too, and there are some ways to make this feel possible.

“After discovering that my father was affected, I wanted to connect with people facing ATTR-CM. Just being able to talk is incredibly helpful.” – Caregiver of person living with amyloidosis

“I create posts and share videos, but mostly I tell my own story. This act of sharing helps everyone - it gives us strength.” – Moderator of online support group

If you are caring for someone with ATTR-CM, you may be a spouse, parent, child, sibling, or close friend. Regardless of your relationship, supporting someone through their journey with ATTR-CM often means taking on new responsibilities. For example, you may find yourself needing to help with more household chores, driving them to regular medical appointments, and spending less time on your own hobbies or social activities.

“It’s not just people living with ATTR-CM that are looking for information, but it’s also their wives, partners, daughters, sons—they’re trying to understand how to help.”

Moderator of online support group

You may also play a key role in providing emotional support, offering them a space to open up about their feelings, and encouraging them to stay active and maintain a positive mindset. It is natural to feel overwhelmed as you balance their needs with your own. It is not easy to watch someone close to you adapt to life with ATTR-CM, but you do not need to do everything on your own. Building a support network, knowing when to ask for help, and looking after yourself are important for anyone looking after someone with an illness or condition that requires care.

It is normal to have worries and questions about the person you are caring for and to feel concerned about your own wellbeing too.

Your role as a caregiver

It is normal to feel responsible for the health of the person you care for, but it is important to remember that while you can provide support, you cannot solve all their needs or answer all their questions.Simply being present, listening, and encouraging them through difficult times can make a huge difference. Your care helps them feel less alone and more able to cope with their condition.

“After discovering that my father was affected, I wanted to connect with people facing ATTR-CM. Just being able to talk to others who are going through the same thing is incredibly helpful.”

Caregiver of person living with amyloidosis

Guidance for caregivers

The following advice may help you support someone living with ATTR-CM:

Learn more about ATTR-CM

Understanding ATTR-CM will help you make sense of their symptoms, feel more confident during doctor’s appointments, ask questions, and understand treatment options.

Our website provides a simple overview of ATTR-CM, so you can learn how the disease develops, the signs and symptoms to look out for, the tests that are used to diagnose it, the different types of treatments available, and the lifestyle changes that can help to manage ATTR-CM.

Keep track of their ATTR-CM symptoms

You may know the person you are caring for better than anyone else. Doctors only see them for short visits, but you see the day-to-day changes. It is helpful to regularly write down their symptoms, concerns, or any changes using a health diary and symptom tracker. You can share these details with doctors and nurses during check-ups to help them monitor and improve care.

For a simple symptom tracker that you and the person you are caring for can use to note down how they are feeling each week, see a downloadable version below.

Encourage healthy habits

The person you are caring for may have been encouraged to make small changes to their lifestyle, such as eating well and moving their body, to support the health of their heart. However, keeping up with these habits can feel draining, and staying motivated is not always easy.

You can help by:

Using positive and supportive language
Encouraging them to gradually make small changes in their daily lives, such as gentle exercise or activity, to make habits easier to maintain
Making lifestyle changes together, so they feel less alone
Looking out for suitable support groups or programmes

Even small steps, taken consistently, can make a big difference.

Helping someone living with ATTR-CM manage their condition

Living with ATTR-CM often means taking multiple medicines and attending frequent check-ups, often with different doctors and at different places.

You can support by:

Reminding them to take their medication at the right time and dose, or set phone reminders
Helping to organise repeat prescriptions
Keeping a calendar of upcoming appointments

Creating simple routines around taking medicines can help reduce stress for everyone and ensure nothing is missed.

Look after yourself

Caring for someone else is demanding, and it is easy to put your own wellbeing last. But to be at your best, you need to protect your own health too.

It is just as crucial for you to stay social and involved in hobbies as it is for the person you are caring for. Prioritising exercise, time outside, a healthy diet, mindfulness, and good quality sleep are also key to maintaining your wellbeing.

If supporting someone with ATTR-CM is affecting the way you feel, it may help to talk to your doctor or a mental health professional (i.e., a therapist or a counsellor). Another option is to join a support group. While these are often for people living with ATTR-CM, they also offer family members and caregivers a space to share their feelings and connect with others who have had similar experiences.

Looking after your mental and physical wellbeing will help you continue to provide the best care for someone living with ATTR-CM.

ATTR-CM symptom tracker

ATTR-CM symptom trackerPDF (0.18 MB)

“Some see sharing as a source of strength, others prefer to remain anonymous as a form of protection. I create posts and share videos, but mostly I tell my own story. Writing about it gives me strength, and many people tell me, ‘You’ve written exactly what I feel.’ So, this act of sharing helps everyone - it gives us strength.”

Moderator of online support group

To explore topics in other sections, click on the links below:

Further support

Explore common questions, understand key terms, pronounce complex words

What is amyloïdose?

Understanding amyloidosis: Know your condition, understand your type, recognise your symptoms

Managing ATTR-CM care

Recognizing early signs and symptoms of ATTR-CM can help support timely diagnosis.

Living with ATTR-CM

Recognize symptoms, adjust your daily routines, and support your well-being.

References

1
Rintell D, et al. Orphanet J Rare Dis. 2021;16(1):70.
2
Mind. How to improve your mental wellbeing. Available at: https://www.mind.org.uk/information-support/tips-for-everyday-living/wellbeing/ (Last accessed: March 2026).