SUPPORTING FAMILY CAREGIVERS

Informal or unpaid family caregivers are the primary source of support for older adults and people with disabilities in the United States. Approximately 25% of U.S. adults 18 years of age and older provide care or assistance to a person with a chronic illness or disability. As the number of older Americans increases, so will the number of caregivers needed to provide care. It is expected there will be 71 million people ages 65 years and older in 2030 (CDC, 2019b).

While some aspects of caregiving may be rewarding, caregivers can also be at increased risk for negative health consequences. These may include:

• Increased risk of depression and anxiety
• Higher use of psychoactive medications
• Worse self-reported physical health
• Compromised immune function
• Increased risk of early death

In addition, caregivers and their families often experience economic hardships through lost wages and additional medical expenses (CDC, 2019b).

Caregiver Stress

Caregiver stress—the emotional and physical stress of caregiving—is common. Risk factors for caregiver stress include:

• Being female (highest risk)
• Having fewer years of formal education
• Living with the person being cared for
• Presence of difficult family dynamics
• Competing responsibilities between work and caregiving
• Being socially isolated
• Having depression
• Having financial difficulties
• Spending a higher number of hours caregiving
• Lacking coping and problem-solving skills
• Lack of choice about being a caregiver
  (Mayo Clinic, 2020f)

Caregiving roles and demands are further impacted by factors such as:

• Caring for a person with a dementia (e.g., Alzheimer’s disease) or brain-impairing disorder
• Long-distance caregiving requiring coordinating services and putting together a team of unpaid and paid help
• Being in rural settings with fewer available healthcare services
• Cultural expectations (e.g., daughters or daughters-in-law are expected to assume the primary caregiver role)
  (Mayo Clinic, 2020f)

Assessing Caregivers

Most caregivers are ill-prepared for their role and provide care with little or no support. Evidence indicates that the most effective support begins with an assessment of caregivers’ risks, needs, strengths, and preferences. However, most healthcare and long-term care providers do not assess the health, skills, employment, and willingness of family caregivers and provide them little, if any, training to carry out medical procedures, personal care, and care coordination tasks they are expected to perform.

Caregivers must be identified in both the care recipient’s and the caregiver’s medical record. This acknowledges their role as part of a care team and sensitizes providers to the importance of engaging the caregiver when making patient treatment plans (Schulz et al., 2018).

Caregiver Education and Training

Education and skills training improve caregiver confidence and ability to manage daily care challenges. Training strategies that involve active participation of the caregiver are particularly effective in achieving positive outcomes.

Counseling, self-care, relaxation training, and respite programs can improve caregivers’ and patients’ quality of life.

Technology-based caregiver support, education, and skills training can be an effective and efficient alternative for enhancing caregiver knowledge and skills (Schulz et al., 2018).

Healthcare providers can connect family caregivers to support services and resources through the National Family Caregiver Support Program. To access these services, the caregiver can contact the local Area Agency on Aging through the Eldercare Locator (see “Resources” at end of this course).