Caregiver Stress

Caregivers bew-are! The impacts of caregiver stress

By Sheila Goodman

I am a medical social worker for a hospice agency. As I walked into a patient's home for my weekly hospice visit, I called out to her caregiver but there was no response. Entering the family room, I saw my hospice patient resting comfortably on the couch. But slumped nearby in an easy chair was her caregiver, unconscious. I called 911. The paramedics arrived quickly and loaded into the ambulance the last person I had imagined would need help. The caregiver was hospitalized and treated for a probable heart attack.

Later, after he had returned home, I asked what had happened. Apparently, he hadn't felt well for days but didn't tell his family because he thought no one could take care of his mother-in-law as well as he could.

Caregiver Stress a Mortality Risk

Unfortunately, for those who work with clients nearing the end of life, caregiver illness is a common situation and the number of caregivers experiencing detrimental effects is growing. Caregivers develop physical and emotional health problems due to the stress of caregiving, which then lead to increased mortality risk. According to Schulz and Beach in their 1999 prospective population-based cohort study published in JAMA (282:23;  http://goo.gl/KdNJlQ) , primary caregivers have a 63 percent increased risk of dying; compared with non-caregivers. Prolonged caregiver stress not only endangers the caregiver's health, but also the health of the care recipient.

The medical system as we know'" it cannot meet all of a patient's needs, thus more and more family members are taking on the role of primary caregivers for their dying family members, and enrolling them in hospice care. In 1982, hospice served approximately 25,000 patients.

By 2008, this number had increased to 14.5 million patients, according to the National Hospice and Palliative Care Organization (http://goo.gl/OCMN6c), and is expected to consistently increase as the baby boomers age.

'Primary caregivers have a 63 percent increased risk of dying.'

According to the National Alliance for Caregiving, in 2009 there were 43.5 million caregivers nationwide, and this number is climbing (http//goo.gVKd9Lby). The growing number of caregivers for terminally ill patients, and the related threat to caregivers' health, requires professionals, especially social workers, to teach caregivers the best practices possible to protect themselves while caregiving.

Patients on hospice care live longer, according to Meyers and Grey in Oncology Nurse Forum (28:73, 2001), so family caregivers are spending more time than expected in a caregiver role and reporting a decreased quality of life. According to Bialon and Coke in the American Journal of Hospice & Palliative Medicine (19:3, 2012; http://goo.gl/isccpB), caregiver and physical reaction to the imbalance of demands placed on the caregiver by various factors, including personal time, multiple roles, physical and emotional states, financial resources, and formal care resources."

In addition, caregivers tend to engage in unhealthy behaviors-poor diet, substance abuse and decreased self-care; these take a toll on caregivers' physical and emotional well-being, according to Newell and colleagues in the Journal of Gerontological Nursing (38:19, 2012).

Tired, anxious or frustrated caregivers also may treat their loved ones with less patience and compassion. A chronically stressed caregiver can contribute to their charge's declining health-and sometimes even premature institutionalization.

Minimizing Caregiver Burden

How can social workers minimize care-giver burden? Qualitative research studies have identified four ways.

First, when hospice social workers perform an initial assessment of newly admitted patients, they must educate the caregiver about preventive measures for avoiding personal health issues. Such measures include a eating a healthy diet, exercising, participating in a support system, maintaining a spiritual connection and seeking outside assistance (e.g., respite care) when needed.

Second, the social worker must inform caregivers that research has substantiated that caregivers' conflict about this role and caregiving's effects on other relationships serve as stressors impacting caregivers' quality of life. Social workers need to help caregivers identify the appropriate available resources to maintain their important roles.

Caregivers need information, education and training on preventing and ameliorating stress.

Third, research shows that caregivers are concerned about their lack of knowledge around how to physically care for their care recipient. Caregivers need training on lifting patients (e.g., body mechanics), performing personal hygiene tasks, dispensing medication and managing symptoms.

Last, research has indicated that many caregivers lack a spiritual connection. Those having a spiritual connection experienced lower levels of stress and a deeper sense of meaning in their caregiver role.

Social workers treating end-of-life clients must educate and assist caregivers in managing caregiver stress and minimizing caregiver burden. They also should inform other professionals who work with caregivers providing end-of-life care about these four empirically identified areas.

Fortunately, my client's caregiver received medical treatment and was fine, however, with specific education and support, his chances of a recurring health scare can be minimized. •

Sheila Goodman is an M.S.W. candidate at the USC School of Social Work in Los Angeles, Calif, and a hospice worker for Cadence Hospital in Orange, Calif

Reprinted from: Aging Today March-April 2016 issue