2021 | HFSA

The Caregiver’s Role Is so Important in a Heart Failure (HF) Patient’s Journey

Patient News Heart Failure Awareness 365

Sponsored content provided by Novartis                                                                                          


Video file


"We can all make a difference in the lives of others in need because it is the most simple of gestures that make the most significant of differences." ― Miya Yamanouchi

As a caregiver you are such an important part of your loved one’s journey, from the moment they were told “you have heart failure.” With any chronic diagnosis, a patient’s world turns upside down, with the fear of the unknown. With heart failure, the word “failure” feels like there is no hope and their life is over. From diagnosis, you become their advocate, another set of eyes and ears to help them manage the condition. You are their cheerleader knowing they can live life with heart failure, but will need to make some changes. You are their confidante and steward, keeping your loved one on track – making sure they are following a heart-healthy diet, staying active and taking their medicine as prescribed by their Health Care Professional (HCP).

At times being a caregiver may seem overwhelming, but you are not alone. In 2020, in the US there were [53M] caregivers providing unpaid care for a loved one. This number increased 16% from 5 years ago. Six out of 10 caregivers are women and 4 out of 10 are men. And 61% of caregivers are still working, while also taking on the role of caregiver. Caregiving spans across multiple generations – Baby Boomers represent the largest percent of caregivers at 34%, followed by GenX at 29%, Millennials at 23%, Greatest/Silent at 7% and Gen Z at 6%.1

Caregivers often forget to take care of themselves, but you must take “me” time so that you stay healthy. While 41% of caregivers feel that their health is excellent/good, there are 21% who say that their health has gotten worse while taking care of a loved one1. That is why it is so important to also take care of yourself.

You also shouldn’t feel like you need to take on the role of caring for your loved one on your own. If you are able to, ask for help from other family members, friends or even neighbors so you can care for yourself for such things as:

  • Making doctor’s appointments
  • Taking time to de-stress
  • Doing a hobby you love
  • Seeking support groups, whether online or in-person to speak with other caregivers

Every day is a new day on your caregiving journey. And while each day may present different challenges—some surprises, some frustrations, some joy—it is important to stay focused on the overall goal: knowing what to expect emotionally, knowing how and where to get the help you and your loved one needs, when you need it. Caregivers are wonderful spouses/children/friends, etc. that need to be recognized every day for their love and support.

Education and awareness of HF is so important. Knowing the signs and symptoms of HF can help patients recognize these symptoms and get to their health care professional (HCP) as soon as possible. Sometimes people think that HF symptoms are a sign of getting older and don’t realize that they could actually be HF. The most common signs and symptoms of HF that a patient should look out for are shortness of breath, coughing, feeling tired, and swelling of the ankles, feet and stomach. 

It is important to work with an HCP as soon as any signs are noticed. This will ensure a timely diagnosis. The key to a successful plan for managing HF is to have an open conversation with an HCP. Together, you can talk about your goals and work on a plan for managing your HF that will work best for you. Your HCP may recommend you change your eating habits to follow a heart-healthy low-salt diet. They may also add physical activity into your daily routine. Making these changes can have a positive impact on helping people with HF manage their condition successfully. 

For more information on Caregiving and to celebrate Patient Day, go to hfsa.org. To learn more about HF, and ways to manage the condition, sign-up to receive a Heart Failure Handbook, visit keepitpumping.com.


Helpful Resources

Visit the HFSA Patient Hub to explore tools and resources to help patients stay healthy while living with heart failure. 

View Heart Failure Awareness 365 activities to stay up-to-date on tips for healthy living for people living with heart failure.



 1 Caregiving in the US 2020 Conducted by AARP and National Alliance for Caregiving (NAC)