Providing care for an elderly or chronically ill relative or friend is a role increasingly assumed by American families. Studies of informal caregiving consistently indicate that 75 to 80 percent of care is provided by family members and other informal providers. It is clear that the health care system is highly dependent on both self-care by the patient and care provided by families to achieve optimum health and well-being for people with chronic illness. For the first time in U.S. history, women are spending more time caring for elderly parents than caring for their own dependent children. Women, who provide a disproportionate share of caregiving compared to men, now spend an average of 17 years of their adult lives as the mothers of dependent children and 18 years as the daughters of elderly dependent parents. As families become more geographically dispersed and more women working, family caregivers face additional challenges.
In the past 10 years, family caregiver responsibilities have increased significantly. Decreasing lengths of in-patient stays and increased reliance on outpatient care has resulted in family members assuming caregiving responsibilities that had previously been done by health care professionals. In addition to early hospital discharge, the rising number of people living to advanced ages, combined with a growing prevalence of chronic disease, has increased demands on family members as caregivers.5 The rise in hospice organizations during this same time has also contributed to a greater use of home care in the terminal stages of illness. Although home health and hospice services delivered by professionals also increased in the last decade, the majority of home care is still provided by relatives and friends who are untrained and inexperienced in providing medical care and detecting problems. The prepared family caregiver, working as a member of the patient’s health care team, contributes significantly to the patient’s quality of life by helping to control symptoms and by observing and reporting symptoms at an early stage to prevent serious medical problems from developing.
Long-term caregiving families have many needs. They need connections with resources to get their questions answered; they need to know where they can obtain needed information and where they can receive support and encouragement to carry on what in many cases is a daunting task. Table 11 shows important needs for family caregivers who provide care over a long term for a family member with a chronic illness.
Important Needs of Long-Term Family Caregivers
Source: Boise, L., Heagerty, B., & Eskenazi, L. (1996). „Facing chronic illness: the family support model and its benefits.“ Patient Education and Counseling, 27 (1), 75-84.
Information – Patients and families coping with severe illnesses such as cancer, heart disease, diabetes, chronic obstructive pulmonary diseases (COPD), or Alzheimer’s disease face unique issues. Information enables families to make informed choices about health service utilization and to decide when to contact healthcare professionals for service and advice. Having sufficient information can greatly reduce the fear and anxiety that is often associated with chronic illness.
Education – In contrast to presenting information, patient and family education enhances skills and helps the patient with psychological adaptation to illness and family members with adaptation to caregiving. Education enhances skills and promotes self-efficacy-the feeling that one is capable of managing problems and of coping with care needs. Patients with chronic disease and their family caregivers often must learn how to do caregiving tasks that require special skills and knowledge. For example, they may need to learn how to attend to physical care needs, control pain, and manage the emotional aspects of illness. Caregivers of family members with dementia may have to learn how to manage difficult behaviors, such as sleep disturbances and catastrophic reactions of their relative to bathing or other daily activities.6 Numerous studies have found a strong relationship between self-efficacy and health behavior change and maintenance. It is clear that self-efficacy can be enhanced by increasing family caregivers‘ knowledge and skills.
Respite – Respite offers the opportunity for family members to continue in their role as primary caregivers. Not all families who provide care may feel the need for respite services. However, when extensive care is needed-especially when it involves stressful elements such as caring for a severely demented person, constant care, or dealing with behavioral issues-a break for the caregiver can be essential for the health and well-being of both the caregiver and the care recipient.
Support – People with chronic illness and family members caring for them are at high risk of depression. An individual’s perception of his or her level of social support can be an important factor in decreasing the potential for depression. In addition, people who are the primary caregivers may be reluctant or feel powerless to ask their family for help. Support groups offer an empathetic understanding that can only be provided by people facing the same problems who truly understand the issues and needs. Simply knowing there is another person who understands and is willing to help is an important source of support for the family caregiver.