Acknowledging Mental Health in Caregivers
Mental Distress in Caregiving
Caring for someone with an illness or disability is accompanied by both some of the greatest highs and the most challenging lows. While it is a role that most accept without hesitation when it comes to a loved one, caregiving often bears a heavy weight on one’s own mental and physical health. The unwavering dedication of providing someone else with constant care and support and the strong emotions that accompany witnessing difficult diagnoses requires a degree of personal sacrifice that can lead to neglect of one’s own health.
Caregiver mental health is an area of today’s health that is widely overlooked and deserves more attention. The day-to-day stressors of caring for a patient, whether it is a family member or not, require an incredible amount of energy coupled with an environment of isolation that can quickly wear on aspects of one’s mental health. Given these challenging circumstances, it is little surprise that depression and anxiety are common mental illnesses seen in caregivers. Family Caregiver Alliance reports that an estimated 20% of caregivers experience depression while another 40-70% of caregivers meet clinical signs of depression (Care Giver Alliance, 2023). The taxing nature of the responsibilities that come with caring for a patient can accumulate and be detrimental to one’s mental health.
Balancing Personal Life with Caregiving
Just as the degree and type of caregiving varies from person to person, so do the consequences of caregiving. The delicate act of balancing one’s personal life and caregiving duties can quickly become strained by several factors including long hours. In a 2021 study, 50% of caregivers provided over 40 hours of care a week on top of their full-time job (Carewell, 2021). Personal time is imperative for an individual’s overall wellbeing especially when fulfilling a role that can be consuming to one’s self-identity. Spending hours on end caring for someone with an illness can push a caregiver to neglect enjoying their favorite hobbies, spending free time with friends and family, and investing in acts of self-care— all pivotal elements to maintaining a healthy mind. The interconnected domains within a caregiver’s life can be strained by this decrease in personal time. Finances, social support, and transportation are some of the root causes of the resulting distress. It is known that mounting responsibilities lead to an increase in stress that creates feelings of exhaustion, anger, and sadness (Family Caregiver Alliance, 2023). Many caregivers are not aware that their health needs attention during this time and are typically unfamiliar to the resources available.
Mental health resources tailored to caregivers are less prominent than those for people with an illness, but nevertheless, they do exist and are a critical tool needing greater visibility to reach its target audience. The previously mentioned 2021 study builds on the case that caregiver resources remain overlooked by finding that 75% of caregivers had never used local caregiving resources (Carewell, 2021). While garnering visibility of the underutilized resources so they become accessible to struggling caregivers, getting caregivers to actively seek help through the resources is then the crucial next step to generate change and address the mental burden of caregiving.
The Truth in Being a Family Caregiver
Patient Planning Services’ Enterprise Account Executive, Jennifer DePoy RN, understands the ins and outs of caretaking as she has firsthand experience of being a prime caretaker for her father who was diagnosed with Adenoid Cystic Carcinoma in the fall of 2022. She temporarily relocated from California to Vermont to support his cancer journey, including his 16 hours of surgery, numerous appointments, and upcoming course of radiation and chemotherapy. Jennifer shares some of her experiences as a caregiver and how it has affected her mental health.
“Being a caregiver is both a beautiful gift and an isolating reality. I cannot imagine being anywhere else at this moment in time, however, I also imagine running away almost every day for one reason or another.”
Jennifer, like many other caregivers, goes through fluctuating emotions as they attempt to navigate this complex responsibility. Understanding how to help oneself can be the most important part in keeping a healthy headspace.
“My best advice to other caregivers is to feel all your feelings. Give yourself permission to do what feels right to you. Sometimes a meal out with a friend is exactly what you need while another day canceling your plans and getting lost in a reality tv show may do the trick.”
Available Resources for Caregivers
Though many times caregiving can be lonely and isolating, caregivers are not alone. There are a variety of resources specialized to give caregivers the support and attention they need. Screening for psychological distress in caregivers is the first step in receiving proper care. Assessing the domains that make up one’s mental health can create a curated approach to improve overall mental wellbeing. Finances, social support, practical issues, personal wellness should be incorporated into distress screening to address all players that contribute to a caregiver’s mental wellbeing. Distress screening is readily available to patients with an illness, but less so in the caregiver population. The Cancer Support Community researchers have created and validated a caregiver version of the novel Cancer Support Source™, a validated distress screener for cancer patients. Patient Planning Services has exclusivity to license the tool. The Cancer Support Source-Caregiver is tailored to assess mental health needs of those caring for cancer patients. The assessment evaluates both the caregivers’ concerns about the patient’s health as well as their own. This distress screener allows for the mental health needs of caregivers to be identified and creates a comprehensive care plan tailored to their specific needs. The individuality of the screener ensures the resources provided are the most effective to each caregiver. Screening tools like the Cancer Support Source – Caregiver expand the availability of mental health resources in the caregiver population. Acknowledging the gap in mental health awareness in caregivers encourages the improvement and availability of resources that could improve their mental wellbeing.
Alliance, Family Caregiver. “Caregiver Depression: A Silent Health Crisis.” Caregiver Depression: A Silent Health Crisis – Family Caregiver Alliance, https://www.caregiver.org/resource/caregiver-depression-silent-health-crisis/.
Carewell. (2022). Supporting Family Caregivers: Identifying the Gaps in Support for America’s Hidden Workforce, https://assets.ctfassets.net/ra4mbqa7hpmd/1AwnMsquEa8EUpI6q2cPdQ/3f6064ed5b44179194cbc75094e9fdf5/Carewell_Supporting_Family_Caregivers__White_paper_Nov22.pdf