How health professionals can help family caregivers put out the flames of burnout

Caregiver burnout affects more than 60% of the 53 million family caregivers who provide care to an adult. The negative health impact of burnout can lead to the family caregiver becoming more ill than the person for whom they provide care. This article helps define the signs of burnout and how health care professionals can help family caregivers avoid burnout before it happens.

What is caregiver burnout?

Caregiver burnout is becoming an increasingly serious health issue among family members who do not have established circles of support and outlets for emotional stress. The Cleveland Clinic estimates more than 60% of all family caregivers experience burnout in caring for their older loved one.

It is particularly hard on family members who have a higher burden of intense caregiving such as those caring for a loved one with advanced stages of Alzheimer’s. Studies show about 40% of family caregivers of people with dementia suffer from depression compared to 5-17% of non-caregivers of similar ages.¹ But, burnout can also be tied to other stressful life events. During the COVID-19 pandemic, family caregivers of older adults were more than three times as likely to have suicidal thoughts or to use substances to cope according to the CDC.^2,3 And struggles in a caregiver’s work life or other relationships can also contribute to burnout.

The U.S. Census Bureau projects from 2022 to 2060, the population of adults age 65 and older in the U.S. will increase dramatically from 57.8 million to 88.8 million. The number of adults age 85 and older is expected to nearly triple over the same period from 6.5 million to 17.5 million.⁴ Many family members make promises to their parent, in-law or other older loved one to keep them living in their home as long as possible. However, achieving this promise can become challenging, especially without the help of a direct care worker (DCW). A family caregiver trying to care for a loved one without external help, faces the cumulative stress that ultimately becomes burnout.

What are the signs of burnout? 

Burnout can be tied to physical fatigue of caring for an older loved one but more often is associated with the complex emotions of caregiving. Burnout is often described using the idiom, “a person burning the candle at both ends.” Sufferers of burnout typically withdraw from social activities, lose interest in hobbies or events once enjoyed and have constant feelings of both hopelessness and helplessness in solving overwhelming stress. This emotional turmoil also affects:

• Sleep health (insomnia, awakenings during the night, fatigue/exhaustion during the day)
• Immune system (lowered antibodies that help fight off colds or flu)
• Appetite or weight changes (gain – eating mindlessly; or loss – lack of interest in food)
• Concentration (brain fog, attentiveness, focus)
• Physical impact (more pains and aches, potential higher blood pressure)
• Negative emotions (increased irritability, frustration or anger towards others as well as feelings of depression over an inability of how to change things)
• Risky health behaviors – some caregivers adopt or fall back into bad habits to cope (smoking, increased alcohol consumption, prescription drugs to sleep, etc.)

Burnout vs. compassion fatigue – it is all about control

Burnout is often used interchangeably with compassion fatigue but they are different emotional health issues. Compassion fatigue occurs when a family caregiver takes on the emotional feelings of their loved one. It may be adopting a sense of loneliness or negative feelings about life in general. Being around a person who expresses these feelings and then absorbing these negative emotions, the family caregiver believes she/he is bonding with the person in their care but in actuality it is enabling the care receiver to have control over his/her emotional health.

Alternatively, burnout is more about a personal feeling of one’s status and ability to have control over the various elements in his/her life. This is common among family caregivers who believe they did not have a choice in taking on the care of another family member. Burnout may also be caused by an overwhelming caregiving schedule, such as juggling caregiving and work or caring for an older loved one and younger children simultaneously, a lifestyle role for 25% of all American adults and more than half of those in their 40s who are referred to as the Sandwich Generation.^5,6 As well, intense care activities such as caring for a non-ambulatory loved one, a person with incontinence or a loved one with dementia, where the family member has no training for this level of care, creates burnout from the caregiving situation but is not based on the feelings and interaction with the person for which one cares.

Both burnout and compassion fatigue are functions of allowing more of an external locus of control in life rather than an internal locus of control. This means allowing others – whether directly or situationally – to affect one’s emotional health. Loss of control can lead to depression, anger or frustration and thus, increased stress that over time becomes burnout.

Burnout also impacts a caregiver’s self-worth – not feeling appreciated or valued for the sacrifices many caregivers make plays a vital role in caregiver burnout. When burnout occurs, a caregiver’s reservoir of resiliency is depleted. The ways to avoid or address burnout is for the caregiver to learn how to strengthen internal locus of control, understand one cannot change reality but can change the reaction to it and to seek support along the caregiving journey. 

How health care professionals can help put out the flames of caregiver burnout

Home care workers, physicians, nurses and other health care professionals can play a vital role in recognizing and helping a family caregiver to address their caregiver burnout crisis. When a home care worker is engaged by a family to care for an older loved one, they are two lives that need care: the older adult and the family caregiver.

Recognizing that family caregivers need both the physical task assistance but also the emotional support while caregiving is the first step. When direct care workers (DCWs) form a bond with the family caregiver and are seen as more of a partner rather than a service provider, family members have more trust in the care of their loved one and less stress. Also, when people tackle a challenge together rather than going it alone, which many caregivers feel, the support helps alleviate stress and anxiety.

And, helping a caregiver to seek respite breaks to practice self-care guides a family member to find the balance needed while caregiving. Remind the caregiver that she/he needs to care for themselves as well as she/he cares for a loved one. By relieving the family member occasionally from their caregiving tasks, the family member can refocus on being present with a loved one rather than worrying about their daily activity needs. This helps a caregiver address the grief or guilt they may be feeling and gives them a deeper connection to their loved one that becomes one of the gifts of caregiving. By helping two lives – the older loved one and their family caregiver – they can thrive and find joy during the caregiving journey. 

Comfort Keepers^® Can Help

Comfort Keepers^® provides uplifting in-home care that helps seniors thrive. Our specially trained caregivers, including dementia care, focus on developing genuine relationships with clients, keeping them physically and mentally engaged while ensuring they experience joy in their daily activities. And, our mission to uplift the human spirit and spread joy is something we give to our clients but also to our direct care workers staff.

If you know a patient or family that could benefit from Comfort Keepers’ services, they can reach out for a free consultation. Let’s work together to help individuals age comfortably and confidently at home.

REFERENCES

¹ Alzheimer’s Association, (March, 2024). Alzheimer’s Association facts and figures report 2024. Alzheimer’s Association, Chicago, IL. Retrieved from: https://www.alz.org/alzheimers-dementia/facts-figures

² DeAngelis, T. (November 1, 2020). Stress and caregiving. American Psychological Association (APA)., Washington, D.C. Retrieved: https://www.apa.org/monitor/2020/11/numbers-stress-caregivers 

³ Czeisler M.É., et al. (2020). Mental health, substance use, and suicidal ideation during the COVID-19 pandemic. United States, June 24–30, 2020. Morbidity and Mortality Weekly Report.

⁴ U.S. Census Bureau, (2023). 2023 National Population Projections Datasets, Projected Population by Single Year of Age, Sex, Race, and Hispanic Origin for the United States: 2022 to 2065.Analysis by PHI (July 2024) Retrieved from: https://www.census.gov/data/tables/2023/demo/popproj/2023-summary-tables.html

⁵ E. Harrington and B. McInturff, (September 29, 2021). Working While Caring: A National Survey of Caregiver Stress in the U.S. Workforce. Public Opinion Strategies survey for the Rosalynn Carter Institute for Caregivers, Americus, GA. Retrieved from: https://rosalynncarter.org/working-while-caring-rosalynn-carter-institute-sounds-alarm-on-behalf-of-employed-family-caregivers/

⁶ Horowitz, J.M. (April 8, 2022). More than half of Americans in their 40s are ‘sandwiched’ between an aging parent and their own children. Pew Research Center, Washington, D.C. Retrieved: https://www.pewresearch.org/short-reads/2022/04/08/more-than-half-of-americans-in-their-40s-are-sandwiched-between-an-aging-parent-and-their-own-children/#:~:text=As%20people%20are%20living%20longer,attainment%2C%20income%20and%20marital%20status.

RESOURCES:

Caregiver support groups can be valuable outlets for emotional stress. They are often best when associated with the disease or disability of the loved one:

Alzheimer’s Association caregiver support groups

Cancer caregiver support groups

MS Society caregiver support groups

Parkinson’s caregiver support information and tools

VA Caregiver Support Program