A heart failure (HF) diagnosis can be a shock, a condition that will affect the person receiving the diagnosis as well as the family or loved ones who will care for them. Heart failure is a chronic problem that can often be managed but generally not cured.1-3
More than 23 million people around the world have heart failure. They will require support from caregivers to maintain their best health and quality of life.1 Most of these caregivers are unpaid family members. This can cause a change in the family dynamic, providing a rewarding experience for many and frustrations at times for all involved.
HF is a progressive condition, and as it gets worse the toll on caregivers can impact their own personal health. This can interfere with the delivery of patient care.1 Caregivers need a support system. If they become sick, frustrated, or exhausted, they cannot get relief themselves or provide care to others.2
Caring for someone with heart failure requires stamina, patience, and good communication skills. Responsibilities can include medication management, planning and preparing healthy meals, even assisting with personal care needs like dressing or bathing. Providing emotional support, instituting lifestyle changes, and coordinating medical care appointments are also part of the mission.1,3
While doing all of this and more, caregivers often forget to take care of themselves.2 Studies consistently show that caregivers influence patient health and that good patient health depends on a strong caregiver.1 That includes the caregiver’s health, mental health, decision-making involvement, and health literacy.1
General frustrations for caregivers may include feelings of isolation, limited information, and support from the patient’s healthcare team, or other family members. Many caregivers also report the lack of appreciation or gratitude from the person who they are caring for.
Caregivers often also report:1,3
- A general lack of understanding of heart failure
- The specific kind of HF their loved one has
- What the progression of heart failure is
- What HF medications are for
- Why lifestyle changes are important
- Feeling ignored
- Lack of family support
- Lack of professional medical support including information and resources
- The need for guidance
- How to identify and handle an emergency
Support for caregivers
Caregivers are reported to provide more than 30 hours of care per week for an average period of more than 4 years.1 They often don’t take the time to take care of themselves. Finding a balance between managing their own health, work, and personal lives with caring for a loved one who has heart failure can be hard to do. The ability to manage the home(s), the finances, and patient care, particularly towards the end of life, can leave a caregiver feeling overwhelmed.1
Some caregivers are more likely than others to experience frustrations as care managers. Researchers have identified contributing traits for a more challenging experience as a caregiver include being older, female, and white, as well as having a lower level of education, poor physical and mental health, and low spiritual well-being.1
More information about caregiver needs is being learned through palliative care practice in the treatment of HF.1 Palliative care is an integrative approach to medicine that is designed to provide a sense of control and the opportunity for an improved quality of life for both patients and their caregivers. Part of palliative care is to assess the needs of the family and to develop a care plan for caregivers as well as the patient.1
The goal is to provide support through a variety of resources that can reduce the caregiver burden and frustrations.1 By understanding choices for medical treatment, symptom management, and available resources, palliative care can support caregivers with information, education, and skills aimed at building caregiving strengths and reducing frustrations.
Access to information
Access to information can help a caregiver feel more assured in their responsibilities. Good lifestyle choices regarding diet and exercise are generally considered part of the treatment. Since patients are often reluctant to make the changes recommended by their healthcare team, offering caregivers a way to access help can improve the well-being of all involved. Symptom monitoring, including daily measurement of weight and blood pressure, can help the caregiver and the patient understand when and why certain changes happen. Reporting this information can improve patient care.1-3
Caregiver resources can include:1-3
- Telehealth – the ability to video chat with HF healthcare team members
- Telephone coaching
- Support groups
- Educational emails
- Nutritional counseling and planning
- Exercise instruction for patients and caregivers
By 2030, HF is expected to affect more than 8 million people.1 This will present new challenges to the aging population and their families. Having resources available and established as a part of ongoing community care should help improve the caregiver experience.
Have you shared YOUR heart failure story with us yet?