What is a family caregiver?
Family caregivers provide informal, unpaid care to chronically or seriously ill family members or friends. Typically, this individual enters the caregiving experience without formal training. More than 40 million family caregivers provide care every year with a value estimated at over $450 billion.1
According to the AARP 2015 Caregiving in the U.S. Report, the majority of family caregivers are female, however, 40 percent are male. While the average family caregiver age is 69, nearly 1 in 10 caregivers is 75 years of age or older.
Most family caregivers live within 20 minutes of their care recipient. On average, this individual will spend 24.4 hours a week providing care that may include: assisting with activities of daily living (ADL) such as getting in and out of bed or a chair, transportation, grocery or other shopping, housework and interacting with various providers, agencies, and professionals on behalf of their loved one.
Eighteen percent of family caregivers care for two or more adults. By 2030 it is estimated that the need for family caregivers will exceed the number available to provide the care.2 While this invaluable service is rewarding, it is also difficult.
Recognizing family caregiver stress
The caregiver experience is dynamic with a variety of changing roles and stressors, including decision-making, physically challenging care, and financial concerns. The stress, often called caregiver burden, puts the caregiver at risk for physical and psychological illness at rates higher than their non-caregiving counterparts.1,3,4 However, evidence shows social support is a key mitigating factor in decreasing stress.5,6,7,8
The Mayo Clinic9 identifies caregiver stress as:
- Being overwhelmed or constantly worried
- Feeling tired the majority of time
- Either excessive sleep or not enough sleep
- Weight fluctuations (losing or gaining)
- Easily irritated or angry
- Lack of interest in activities the caregiver once enjoyed
- Feeling sad
- Physical symptoms such as headaches, pain or other physical problems
- Abuse of alcohol, drugs, and prescription medication
Ways to reduce family caregiver stress
Caregivers often hear they need to take care of themselves. This may be easier said than done, and it is possible that the thought of taking time for oneself is overwhelming and guilt producing. Here are several ways family caregivers can reduce stress and burnout:
- First, caregiving is an important but difficult role, and it is okay to feel stressed. Accepting help from others is an important initial step in decreasing stress. This might include assistance with meals, running errands or accepting the help of volunteers into the home to provide time for the caregiver to rest.
- Second, it is important for the family caregiver to maintain adequate social support. Some find it helpful to blog about their experiences. Blogging, a form of public journaling, allows one’s support system to understand what the caregiver is going through and provide possibilities for support. Even when the loved one is blogging about their illness, the caregiver often feels supported and this increased support is a positive experience.8
- Another important goal of the family caregiver is to become knowledgeable about caregiving resources and the illness of their loved one. There are several websites for caregivers, such as Family Caregiver Alliance and the National Family Caregiver Support Program.1, 10 These resources provide information about care training, support groups, respite services, and adult day services. The caregiver is the loved one’s best advocate and through education, the caregiver’s confidence will increase related to the decisions that have to be made.
- Finally, the caregiver should maintain health goals. Good nutrition and sleep are the foundations for health. Finding time for physical activity and talking with one’s healthcare provider about concerning health issues.
Albeit difficult, caregiving is also a journey filled with hopeful and inspirational moments.
- Caregiver health. Family Caregiver Alliance. National Center on Caregiving Web site. https://caregiver.org/caregiver-health. Accessed February 5, 2016.
- Caregiving: A public health priority. http://www.cdc.gov/aging/caregiving/. Accessed October 27, 2016.
- Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. JAMA. 2014; 311(10):1052-1060.
- Petrinec, AB, Mazanec, PM, Burant, CJ, et al.: Coping strategies and posttraumatic stress symptoms in post-ICU family decision makers. Crit Care Med 2015; 43: 1205-1212.
- Given B, Given C, Sherwood P. Family and caregiver needs over the course of the cancer trajectory. J Support Oncol. 2012; 10(2):57-64.
- Garlo K, O’Leary J, Van Ness P, Fried T. Burden in caregivers of older adults with advanced illness. J Am Geriatr Soc. 2010; 58(12):2315-2322.
- Dahlborg Lyckhage E, Lindahl B. Living in liminality-being simultaneously visible and invisible: caregivers’ narratives of palliative care. J Soc Work End Life Palliat Care. 2013; 9(4):272-288.
- Hansen DM, Sheehan D, Stephenson P. The caregiver’s experience with an illness blog. A pilot study. J Hosp & Pall Nursing. 2016; 18(5): 464-469.
- Mayo Clinic Healthy Lifestyle Stress Management. Caregiver stress: Tips for taking care of yourself. http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784 . Accessed on October 27, 2016.
- National Family Caregiver Support Program. Ohio Department of Aging. http://www.aoa.gov/aoa_programs/hcltc/caregiver/index.aspx. Accessed October 27, 2016