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A Caregiver’s Role in Caring for People with Heart Failure

Caregiving is complex. It may start with someone needing a few hours of help here and there and wind up being a full-time job. Taking care of someone with heart failure (HF) is a long-term commitment of time and energy, both emotional and physical.1 And, if you are not a professional, you may face additional challenges in caring for someone you love.2

Caregivers are important as they play a key role in the health outcomes of those with HF. Heart failure is a chronic condition that has become more prevalent with the aging population. It has a multifaceted treatment plan that requires medical, lifestyle, and social change. These areas all contribute to outcome success.3 The quality of the relationship between caregiver and care receiver can impact how both people bare the strain of heart failure. A deep relationship where people share pleasurable activities can improve adherence to lifestyle changes.3 A sense of recognition and gratitude can let the caregiver know they are appreciated.

Change

Heart failure can bring about change. A change in health status, lifestyle, independence, and a change in relationships. Some people become unable to handle the daily things they once could. Most have to significantly change their lifestyle, the way they eat, exercise, and other basic habits. They may become dependent on medication, suffer from anxiety or depression over their diagnosis, and find themselves dependent on someone else.1 The change needed to control heart failure may not be welcomed by the patient or their family. These changes can be hard on everyone.

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New role

Being a caregiver may mean that you have to assume new roles. You may have been a partner or an adult daughter or son, now you may be acting as a support system, a medical attendant, a housekeeper, and a general assistant. Your role as caregiver is likely quite different from your prior relationship.4 This change can be both rewarding and exhausting.

A caregiver’s role is to help and support lifestyle changes that go along with a diagnosis of heart failure. Managing the transition can impact patient health and well-being.4 You may find yourself helping with symptom management, personal care, medical coordination and treatment decision making. Caregivers also engage in a range of other roles including basic function and thinking as well as advocacy.5

Caregivers need support

As the burden of caregiving grows, it is important to recognize how it impacts your quality of life. Many caregivers find themselves facing mental health issues like depression, are susceptible to illness because they are run down, and putting their own lives on hold, resulting in a reduced quality of life.3 Caregivers need support.5

Help can come from family and friends, community organizations, or from people you hire to give you some relief. Having someone to talk to about your experience and your own emotions can be helpful too. There are caregiver support groups for almost every condition imaginable – most have one right in your own community. There are educational and support resources that your healthcare team can provide. Take advantage of online resources to both learn more about heart failure progression and seek out advice from others who are providing similar care.

The role of caregiver is a changing one, one that evolves as the medical situation for the care recipient changes. A caregiver is a member of the healthcare team, often responsible for orchestrating lifestyle change and charged with taking care of many new tasks. A caregiver has to deal with physical and emotional adjustments, all the while recognizing that there is no cure for heart failure.

Caregivers require their own care plan as caregiving affects caregiver health.1,3 Caregivers can experience real medical and psychological problems. Caregivers need their own support system. They need time off to take care of themselves, enjoy life, and attend to their regular work and family responsibilities.

What has your experience with heart failure been like? Anonymously share your thoughts in our first Annual Heart Failure In America survey by clicking here! Not sure? Learn more about our Heart Failure In America surveys here.

Written by: Linda Minton | Last reviewed: November 2019
  1. Help For Heart Failure Caregivers. American Heart Association. Available at https://www.heart.org/en/health-topics/heart-failure/living-with-heart-failure-and-managing-advanced-hf/help-for-heart-failure-caregivers. Accessed 10/27/19.
  2. Family and Caregiver Information. Heart Failure Matters. Available at: https://www.heartfailurematters.org/en_GB/For-caregivers/Family-and-caregiver-information. Accessed 10/27/19.
  3. Lum HD, Lo D, Hooker S, Bekelman DB. Caregiving in heart failure: relationship quality is associated with caregiver benefit finding and caregiver burden. Heart Lung. 2014;43(4):306–310. doi:10.1016/j.hrtlng.2014.05.002
  4. Understanding Your Role. Heart Failure Matters. Available at: https://www.heartfailurematters.org/en_GB/For-caregivers/Understanding-your-role. Accessed 10/27/19.
  5. Support Networks. Heart Failure Matters. Available at: https://www.heartfailurematters.org/en_GB/For-caregivers/Support-Networks. Accessed 10/27/19.