Teri Kennedy, PhD, MSW, LCSW, ACSW, FNAP, Director, Office of Gerontological & Interprofessional Initiatives,
School of Social Work, College of Public Service & Community Solutions, Arizona State University
TIPS FOR ASSESSING THE NEEDS OF FAMILY CAREGIVERS:
Family caregivers provide unpaid but crucial support to family members, partners, and friends living with serious disabling health conditions. The health and other needs of these caregivers, however, are frequently overlooked.
Approximately 40 million family caregivers in the US provide 37 billion hours of care each year at an estimated annual value of $470 billion. Caregivers from ethnic minorities often have fewer financial resources and thus provide more care than others. It is important for geriatric health professionals to prepare family caregivers for their role, assess and address their needs, and respect and recognize them as a core member of the healthcare team.
Benefits of Caregiving
More than 80% of caregivers report positive experiences of caregiving including the satisfaction of providing quality care, supporting the wishes of the care recipient, giving back to someone who has cared for them, and following or modeling a tradition of care in their family. They also report a sense of meaning and purpose in their lives, personal growth, and pride in their role.
Risks of Caregiving
The demands of caregiving can challenge the health of caregivers and aggravate their existing chronic health conditions, particularly for highly strained older adult caregivers. Such caregivers may incur injuries ranging from mild to serious, including falls, injured muscles, and skin abrasions while providing care. Sleep deprivation is also an important issue. As a result of the demands on their time, caregivers are more likely than non-caregivers to neglect their own health and less likely to practice preventive health behaviors. The social support networks of caregivers may dwindle over time resulting in real or perceived social isolation. Performing highly skilled nursing care (e.g., wound or catheter care) without appropriate instruction and support can result in significant stress. Women experience these outcomes more often than men, as women tend to take on more caregiving tasks. They also report more stress than their male caregiver counterparts. Spousal caregivers who report stress are at higher risk for premature death. This is a particular issue when caring for a spouse with dementia. Caregivers of individuals with dementia have abnormalities in endocrine and immune system function biomarkers, and report more stress and depression. Spouses who provide care have an increased risk of adverse medical, psychological, and social outcomes and higher rates of frailty, even after the death of the care recipient.
Caregivers often sacrifice their own physical and emotional needs, resulting in feelings of exhaustion, isolation, anger, and sadness. The constant demands of caregiving can result in mild to severe symptoms of depression. Caregivers who are younger are at higher risk of depression. They often experience a greater effect on their non-caregiving activities, and report less social support, sense of control over their life, and personal growth. Early attention to depression symptoms, along with consultation with a behavioral health professional, when needed, are important. Exercise, healthy diet, social support, and referral for appropriate services are also useful in addressing and ameliorating depression.
Risks to the Care Recipient
In addition to the adverse effects on caregivers themselves, the well-being of a family caregiver can have an important influence on the health and well-being of the care recipient.
In fact, declining health and well-being of a family caregiver is a major risk factor for institutionalization of the care recipient. Recipients of care from caregivers who experience depression or lack coping skills have an increased risk of falling, developing pressure sores, and declining functional abilities. Care recipients requiring high levels of assistance with their care may also be at risk of abuse from caregivers, especially those evidencing marked depression, poor health, and distress.
A comprehensive assessment inclusive of the materials in Table 1 should be used to assess and reassess the needs of family caregivers, and to develop an individualized plan of tailored in-home and community-based support services (see Table 2 & 3). This ongoing planning can serve to stabilize fragile caregiving situations, avoiding abrupt or chaotic situations related to changes in the level or complexity of care. This can also help to avoid unnecessary ED visits, hospitalizations, and undesired institutionalization. Local Area Agencies on Aging are important partners in providing ongoing assessment, referrals and support.
Table 1. Measures of Caregiver Stress/Distress
Table 2. Caregiver Services and Supports
Table 3. Evidence-Based Interventions for Caregivers
Psychoeducational-Skill Building Programs
Interprofessional Approaches to Family Caregivers
The approach to assessing and addressing the needs of care recipients and family caregivers ideally occurs in the context of an interprofessional geriatric team that integrates medical and behavioral health care. It should involve a comprehensive assessment of a patient's multiple chronic conditions. It is crucial to assess a caregiver's ability to safely and appropriately address the needs of the care recipient, including lifts and transfers, through training and teach-backs prior to discharge from facility to home, and by home health care teams for care at home.
Policy Change to Support Family Caregivers
Caregiver support could be substantially improved through enactment of policies such as (a) providing reimbursement codes for caregiver assessment and intervention; (b) establishing competencies for health professionals serving family caregivers of older adults; (c) requiring hospitals and rehabilitation facilities to identify, involve, and instruct (with a teach-back) family caregivers as part of patient care transitions; and (d) supporting paid family and sick leave for family caregivers.
References and Resources
- AARP Public Policy Institute. Issues: Long-term care and family caregiving.
- American Psychological Association. Caregiver briefcase, Washington, DC: APA.
- Cameron, J.I., et al. One-year outcomes in caregivers of critically ill patients. The New England Journal of Medicine, 2016; 374(19), 1831-1841.
- Family Caregiver Alliance. Caregiving issues and strategies, San Francisco, CA.
- Gallagher-Thompson D. & Coon, D.W. Evidence-based psychological treatments for distress in family caregivers of older adults. Psychology and Aging, 2007; 22(1), 37-51.
- Sassel, K.B. & Carr, D.C. Does dementia caregiving accelerate frailty? Findings from the Health and Retirement Study. Gerontologist, 2016; 56(3), 444-450.