The focus of most medical care and concern in dealing with frail elderly patients is on their medical treatments. However, this is a small fraction of the overall care most chronically ill older adults receive. Over 90% of all care to the elderly and disabled is provided by an informal network of family, friends and faith-based organizations (Family Caregiver Alliance, 2011). This invisible network of support sustains most older adults throughout their lives.

In 2009, 61 million Americans were unpaid caregivers during the previous year (Andrus, 2011). This number rose to 65.7 million in 2012 (National Alliance for Caregiving, 2012). At any one time, 43.5 million family caregivers are providing care to older adults in some capacity. The value of this unpaid care is well over $450 billion each year, representing a significant rise from $375 billion in 2007 (Andrus, 2011; National Alliance for Caregiving, 2012). Families provide the bulk of unpaid care to older adults.

Almost two-thirds of all caregivers are women, caring for an adult who is at least 50 years old. The voluntary work is not without hardship. Caregivers surveyed reported paying more than $5000 of their own money to provide care to another (Andrus, 2011). Further, almost 70% of caregivers need to adjust their working schedules to accommodate their caregiving roles (Andrus, 2011). This change in ability to work results in decreased wages, lost retirement savings and potentially the loss of a job.

According to Coughlin (2010) unpaid caregivers will likely be the largest single source of long-term care to the nation’s older citizens in future years. This source of care is often unrecognized and undervalued by healthcare providers.

Almost half of all caregivers are employed full time outside the home (Scharlach et al., 2007). These caregivers are more likely to use caregiver support services and hire paid caregivers to fill in possible gaps. This type of caregiving also leads to fragmentation of services and may prove a frustrating mix for an older adult with dementia (Levine et al., 2009).

The age of a caregiver offers important information into who provides care and to whom. Table 79.1 provides a visual comparison of the age of caregivers and the percentage of care delivered (National Alliance for Caregiving, 2012). While those 49 years of age and younger provide most care, 24% of care is provided by those older than 65.

Table 79.2 is derived from the National Alliance for Caregiving and AARP (2012). Care to adults older than 75 years accounted for 44% of all care.

While there are informal care needs across all demographic groups, 80% of all healthcare dollars spent on caregiving and supporting caregivers is devoted to older adults (Kaye et al., 2010). The increase in governmental support and transition away from skilled nursing and long-term care facilities will result in a rise in federal and state dollars devoted toward keeping informal and family networks in place. Current health policy shifts costs from expensive settings like skilled nursing facilities (SNFs) to more home-like settings with a focus on the individual and their family.

As primary elements of the invisible elder caregiver network, family members are faced with determining living arrangements, and bear responsibility for most elder care decisions (Kane et al., 2006). Financial considerations, including a desire to preserve wealth, often results in elders receiving care at home (Chandra et al., 2006). Most care recipients receive care in their own home, while 20% receive care in the home of their caregiver (usually a child) (Gallup, 2011).

Table 79.3 examines living arrangements for caregivers and older adults. The table compares findings from 2004 and 2009, revealing that fewer older adults live alone; more are living with a spouse or with grown children.

Friends are the second group of informal caregivers. Lifelong acquaintances or neighbors often find their simple acts of kindness turn into ongoing, often reluctant caregiver roles. Shoveling snow may turn into routine home maintenance, transportation, medical advocacy and serving as a communication conduit with the family. It is difficult for these Good Samaritans to limit or terminate their services.

Egging et al. (2011) studied the phenomenon of friends and neighbor-caregivers for older adults. Nine percent of those providing care to an older adult are considered friends, while another 9% are neighbors living within walking distance of the older adult’s home. Friends and neighbors tend to provide a lower level of care delivery than family members. However, they report a high level of stress and feelings of guilt if they plan to be away or need to disrupt their care routines (Egging et al., 2011). This important group of caregivers needs to be recognized in any policy discussion that centers on informal networks of caregiving.

The third variable, faith-based care, has less of a role than family and friends. Faith is important to many older adults. About 35% of all religious memberships are made up of older adults. Half or more of clergy are elderly (Heasty & Lakatos, 1998). Faith-based caregiving provides a level of spiritual and physical care that is comforting for many older adults. Table 79.4 provides information on faith-based elder care.

The integration of medical care delivery in faith-based organizations is characterized by the rising trend of parish nursing, particularly in the United States of America. More than 15 000 registered nurses report involvement in parish nursing (Nursing World, 2012), and faith community nursing (FCN) is now recognized as a specialty practice for registered nurses.

Parish nurses do not generally provide medical care to older adults beyond screenings offered at no charge at church or during home visits. Parish nurses attempt to coordinate services for older adults and work with families to help find resources. The varied roles of a parish nurse include: serving as health advisor, screener and educator; visiting a church member at home, in the hospital, or in a care facility; making referrals to community resources and providing assistance in receiving services; and developing support groups (Nursing World, 2012).

The informal caregiver network is faced with multiple conflicting issues. In the case of spouses, friends and some faith providers, the caregiver is often at least as old as the person requiring help (National Alliance for Caregiving, 2012). These people are often ill-equipped to deal with comorbid conditions of aging elders. This informal network begins to fail when chronic illnesses progress and difficult behaviors arise causing a frail older adult to wear out their caregivers and begin to outlive their own assets. Such is the testament for many admissions to skilled nursing facilities and the growing need for Medicaid dollars to pay for this care (Kaye et al., 2010).

As part of the clinical team treating frail older adults, physical and occupational therapists must be cognizant of each elder patient’s care network. Therapists need to monitor and assess the wellbeing of the caregivers for their older patients. Often the overwhelming burden of caregiving places a risk on the caregiver becoming a patient, too.

Caregivers and care recipients share a unique relationship with complex emotions, experiences and memories. This relationship and responsibility places caregivers at high risk for developing disorders such as anxiety and depression, which may contribute to hostility toward, and even abuse of, the difficult or demented elder. Furthermore, the risk for caregivers developing their own physically debilitating symptoms increases with increased caregiver burden (Alzheimer’s Association, 2011).

Caregiving may be viewed as a linear process beginning from the insidious start of dependency through greater involvement to the eventual demise of the elder. Pfeiffer (2005) identified seven distinct states of caregiving, as outlined below: