How Can Families Prevent Caregiver Burnout?

Hospice can help prevent caregiver burnout in a number of ways. Although most of the day- to-day physical needs of a person receiving hospice care are attended to by family caregivers, hospice staff can offer advice, emotional support, and much-needed respite care. If the caregiver is experiencing extreme distress, they may also provide a referral to a mental health professional who can help that person sort through their feelings and develop more robust coping skills. Hospice staff and volunteers are also well-versed in the kinds of stressors that family caregivers face, and can often suggest concrete ways to lessen the burden when the caregiver(s) feel overwhelmed. 

Caregiver burnout: What is it?

Thanks to advances in science and medicine, many people suffering from a terminal or life-limiting illness today live far longer than they would have even a few decades ago. Further, more and more people approaching the end of life are being cared for in their homes. According to data from the Centers for Disease Control and Prevention, between 2000 and 2018,, the percentage of people who died in hospitals fell from 48% to 35%, while the percentage of people who died in their own homes rose from 22.7% to 31.4%. And while some of those home deaths undoubtedly occurred suddenly, about 7 in 10 are attributable to chronic diseases, according to the CDC. 

What this means from a practical standpoint is that illness trajectories are longer, and fewer sick patients are being cared for in hospitals than any time in the recent past. As a result, more and more family members find themselves in the position of caring for a spouse, sibling or aging parent in their home over many months and even years. This can lead to many different levels of stress and distress, from financial challenges (for example, if someone had to quit their job to take care of the loved one) to exhaustion, anxiety, depression and poor physical health. Eventually, the caregiver may develop feelings of anger and resentment towards the person needing care — challenging emotions that may lead to feelings of guilt and shame. Many family caregivers develop poor eating habits, sleep irregularly and lose contact with other family members and friends. Isolated and overwhelmed, they may eventually descend into the state of physical, emotional and mental exhaustion known as caregiver burnout, which is characterized by anxiety, depression, hopelessness and compassion fatigue. In some extreme cases, a burnt out caregiver may actually neglect or actively harm to the person they have been caring for.

Specific ways in which hospice can help

Caregiver burnout is a sign that a family caregiver is handling more responsibility that they can reasonably manage given the physical, psychological and financial resources available to them. Strategies for preventing or alleviating burnout, therefore, are those that ease the burden of caregiving or increase the resources available to provide care. Hospice can assist with this in various ways, such as:

• Providing respite care so the caregiver can take time for themselves to attend social events, read a book or take a leisurely bath.
• Arranging for volunteers to take care of household chores such as doing laundry, grocery shopping, picking up dry cleaning or cooking a meal
• Ordering equipment and supplies that can make caregiving easier, such as a wheelchair, walker, hospital bed, bedside commode etc. 
• Providing telephone advice when circumstances change, such as when the patient needs more pain medication, sedation or a medication for nausea or vomiting
• Arranging inpatient care if the person who is sick needs emergency care
• Offering support and guidance in identifying resources in the family or community that can help with the person’s care. Oftentimes, family caregivers fail to ask for help because they believe they “should” be able to handle the responsibility of caring for their loved one alone. Hospice staff can help them frame their thinking differently and begin to involve others in the person’s care. 
• Connecting the caregiver to online support groups. The Alzheimer’s Association, for example, offers online support groups and a free online community message board where those caring for someone with dementia can reach out for support.
• Connecting the caregiver to potential sources of financial assistance, including government programs such as SNAP. They can also assist the caregiver in finding out if their state’s Medicaid program offers pay to family caregivers, and if the person who is ill qualifies for assistance through the Department of Veterans Affairs.

Sources

“About Us”. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). https://www.cdc.gov/nccdphp/about/?CDC_AAref_Val=https://www.cdc.gov/chronicdisease/center/index.htm 

“Caregiver Burnout”. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout 

“Are you experiencing compassion fatigue?” American Psychological Association. https://www.apa.org/topics/covid-19/compassion-fatigue 

“Support Groups”. Alzheimer’s Association. https://www.alz.org/help-support/community/support-groups