CARING FOR THE CAREGIVERS

The role of caregiving often falls to a family member. As the disease progresses, care needs become greater, requiring more hours of the caregiver’s time, and the more hours the caregiver devotes, the higher the risk of caregiver overload and stress-related health issues. The following are common risks for caregiver stress/overload:

  • Being a live-in caregiver
  • Being a woman
  • Being an older caregiver
  • Being socially isolated
  • Caring for a person with Alzheimer’s disease for many hours each day
  • Experiencing one’s own financial problems
  • Having depression
  • Having a lower educational level
  • Having poor coping skills and difficulty solving problems
  • Lack of choice in being a caregiver
  • Having little help from family or friends for respite care
    (Mayo Clinic, 2020)

The Effects on Caregivers

Caregivers are often referred to as hidden victims because they commonly experience more psychological and health problems than those who are not caregivers. Evidence shows that most caregivers are poorly prepared for their role and provide care with little or no support. Family members who provide care to individuals with dementia or other chronic conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of providing care.

Higher levels of stress, anxiety, depression, and other mental health effects are common among caregivers. Depression and anxiety disorders in caregivers persist and can even worse after placement of the patient in a nursing home. Many caregivers report experiencing symptoms such as:

  • High levels of stress and feeling frustrated, drained, guilty, and helplessness
  • A loss of self-identity, lower levels of self-esteem
  • Constant worry
  • Feelings of uncertainty

Research has shown that female caregivers (about two thirds of all unpaid caregivers) fare worse than male caregivers, reporting higher levels of depression and anxiety, lower levels of subjective well-being, less satisfaction with life, and poorer physical health.

Caregivers who experience chronic stress may be at greater risk for their own cognitive decline, including loss in short-term memory, attention, and verbal IQ. Studies have found that caregivers have diminished immune response, leading to frequent infections and increased risk of cancers. Caregivers are less likely to engage in preventive health behaviors, and elderly spousal caregivers who experience stress have a 63% higher mortality rate than others the same age.

In response to increasing stress, caregivers have been found to have increased alcohol and other substance use, and to use prescription and psychotropic drugs more than noncaregivers. Spousal caregivers who are at risk of clinical depression are more likely to engage in harmful behavior toward the person.

Keeping family caregivers healthy and able to provide care is important to the nation’s long-term care system, and with the aging of population, this will become more important in the future (FCA, 2021c).

Strategies to Manage Caregiver Stress

Although caregiving can have a negative impact on the caregivers’ health and well-being, research demonstrates its effects can be alleviated at least in part by:

  • A family physician assessment of caregiver needs that leads to a care plan with support services, and repeat assessments with changes in status of caregiver or care recipient
  • Caregiver education and support programs, including national caregiving organizations, local elder care agencies, and websites (see also “Resources” at the end of this course)
  • Respite care to reduce caregiver burden, such as in-home, adult care centers and programs or short-term nursing homes
  • Financial support to alleviate the economic stress of caregiving
  • Primary care interventions that address caregiver needs

Support and anticipatory guidance for the caregiver is especially helpful during care transitions and at the care-recipient’s end of life (Swartz & Collins, 2019).

Compensation for Family Caregivers

When a family member becomes a caregiver, it may impact family finances by requiring the caregiver to make adjustments in employment status. In the United States, it is possible for a caregiver to be paid for caring for a family member with dementia. There are a variety of different programs that offer this option; however, there can be significant hurdles in the process of taking advantage of them.

Governmental programs that pay family members are offered in most, but not all, states. These programs include:

  • Medicaid Home and Community-Based Services Waivers (HCBS) provide financial assistance to purchase home and community-based services and supports. These waivers allow the person with dementia to choose whom they wish to be a personal caregiver, which could be a family member.
  • Medicaid state plans offer personal care services. Often states allow family members to be personal care providers and offer cash compensation.
  • Adult foster care through Medicaid allows an individual with dementia to move into the home of a caregiver to receive around-the-clock supervision. These programs provide compensation for providing care but do not provide cost of room and board.
  • The Caregiver Child Exemption is a Medicaid exemption for an adult child who has a parent with dementia. It is similar to foster care; however, the adult child moves into the home of the parent to provide care. Medicaid rules usually require that the home be forfeited in exchange for care, allowing the home to be transferred to the adult child for compensation after residing in and providing care for their parent for a minimum of two years.

Other programs are available for veterans, and Paid Family Leave Programs are currently offered in a small number of states (Dementia Care Central, 2021b).