Leila Mady, M.D., Ph.D., M.P.H.

Caregivers carry important responsibilities, especially those caring for patients with head and neck cancer. However, it is necessary to bring awareness to the quality-of-life caregivers have when working with nonworking patients who have head and neck cancer.

As previously reported in an article about caregiver burden regarding head and neck cancer, a study published in JAMA Network Open determined that caregivers tend to have lower health-related quality of life (HRQOL) because of the intense nature of head and neck cancer.

“Caregivers of patients with (head and neck cancer) face psychological, emotional, social and financial stressors related to the caregiving. Many caregivers do this because they love and respect the person they're caring for, or they feel like it's their duty,” Dr. Leila Mady, co-author of the study and assistant professor of otolaryngology – head and neck surgery at John Hopkins University School of Medicine, told CURE®. “But taking care of someone can be hard on the caregivers physically and emotionally. Because of this, the caregiver might not take care of themselves as well. This is especially true for caregivers of patients who can't or don’t work and describe a lower quality of life.”

Mady further explained the associations between caregiver burden and lower health-related quality of life, positive changes for caregivers and more.

Q: The study alludes to how gender and age might play a role in a caregiver’s stress levels. Can you elaborate on this a little more?

A: The study showed that a caregiver's stress can be influenced by their gender and age. The study found that women and younger caregivers felt less supported over time. … This could be because women usually take care of more personal and demanding tasks in caregiving. They may also face more negative effects on their jobs because they must balance work and caregiving. … Women caregivers may also feel more sensitive to how others treat them, which can make them feel lonely and inadequate.

Younger caregivers have more burden and anxiety because they must take care of their own families and work, along with caring for someone with cancer. This can harm their physical and mental health.

In contrast, older caregivers tend to see themselves as healthier than the person they care for. This helps them handle their caregiving duties with less burden. These findings show that we need to think about gender and age when we look at caregiver stress.

Q: What can we expect to see now that caregiver health and support has been recognized as a national priority?

A: We hope this can bring about several positive changes and benefits for caregivers. This recognition signifies a greater awareness and understanding of the challenges faced by caregivers and the importance of addressing their needs.

With caregiver health and support being a national priority, we hope to see the development and implementation of support programs and initiatives specifically designed for caregivers. These may include respite care services, which can provide temporary care to individuals who require ongoing assistance or supervision, counseling or therapy options, educational resources and financial assistance programs.

Prioritizing caregiver health means a focus on initiatives and services to improve their overall well-being. This may involve initiatives aimed at reducing caregiver stress, providing mental health support and promoting self-care practices. Caregivers can benefit from increased attention to their physical, emotional and psychological well-being, leading to better quality of life.

The acknowledgment of caregiver health and support as a national priority brings greater recognition and validation to the crucial role that caregivers play in society. It signifies an understanding of their dedication, sacrifices and the importance of their work. This recognition can help alleviate some of the emotional and societal burdens caregivers may feel.

National recognition can lead to policy changes and legal protections that address the specific needs and rights of caregivers. This may include measures such as flexible workplace policies, caregiver leave options and anti-discrimination laws. Such changes can provide caregivers with greater support, security and peace of mind.

Q: Can you elaborate more on how a lack of patient employment and lower patient health-related quality of life are associated with caregiver burden?

A: The lack of patient employment and lower patient health-related quality of life can contribute to caregiver burden in several ways.

When a patient is unable to work, the caregiver often takes on additional responsibilities, such as providing financial support, managing household tasks and taking care of the patient's daily needs. This increased workload can lead to higher levels of caregiver burden, as they must juggle their own responsibilities along with the caregiving duties.

The lack of patient employment can result in financial difficulties for both the patient and the caregiver. This can lead to added stress and strain on the caregiver, who may bear the financial burden or seek additional employment to meet the family's needs. Financial strain adds to the overall caregiver burden and can have negative effects on their well-being.

When a patient's health-related quality of life is lower, they may require more intensive care and support from the caregiver. This can include assisting with daily activities, managing medications, providing emotional support and dealing with the patient's pain or discomfort. The emotional and psychological toll of witnessing a loved one's declining health and managing their care can be significant and contribute to caregiver burden.

Caregivers often prioritize the needs of the patient over their own well-being. The demands of caregiving, coupled with the challenges associated with the patient's lack of employment and lower health-related quality of life, can lead to neglect of the caregiver's own health and well-being.

Q: What are some ways caregivers can balance work with their own health/life without additional burdens?

A: Balancing work with their own health and life is crucial for caregivers to maintain their well-being. Here are some strategies caregivers can consider achieving this balance without adding additional burdens:

Caregivers should not hesitate to ask for help and accept support from family, friends and their community. This can include sharing caregiving responsibilities, seeking assistance with household chores or even asking for emotional support. By delegating tasks and sharing the caregiving load, caregivers can free up time and energy to focus on their own well-being.

Caregivers should explore and utilize the resources available to them. This can involve reaching out to support organizations, caregiver support groups or social service agencies that aid caregivers. These resources can provide valuable information, guidance and respite care options, enabling caregivers to take necessary breaks and prioritize their own health.

Caregivers should prioritize self-care activities that promote physical, emotional and mental well-being. This can include engaging in regular exercise, maintaining a healthy diet, getting enough sleep and finding time for activities they enjoy.

Open communication with employers about caregiving responsibilities is important. Caregivers should inform their employers about their situation and explore available options such as flexible work hours, remote work arrangements or family caregiver leave. Employers who understand the challenges of caregiving may be willing to accommodate caregivers' needs.

Caregivers should ensure they prioritize their own health by attending regular check-ups and medical appointments. Neglecting their own health can lead to more significant health issues down the line. By addressing their own health needs, caregivers can maintain their well-being and be better equipped to care for others.

Caregivers need to set realistic expectations and boundaries for themselves. It's important to understand that they cannot do everything and that it's okay to ask for help or take breaks when needed. Practicing self-compassion and recognizing the importance of their own well-being is essential for maintaining balance and preventing caregiver burnout.

This article was originally published on curetoday.com.