Caregivers
valuing unpaid care
Cheryl L. Anderson
Introduction
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 79.1
Age of Caregivers | Percentage of Care Delivered |
18–49 years | 51% of all care |
50–64 years | 25% of all care |
65+years | 24% of all care |
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.
Table 79.2
Percentage of Care Delivered | Age of Recipient |
44% of care delivered | Age 75 and older |
56% of care delivered | Under age 75 |
28% of care delivered | Under age 50 |
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.
Informal networks
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.
Table 79.3
Trends in caregiver living arrangements, 2004–2009
2009 | 2004 | |
Lives alone | 43% | 47% |
Lives with spouse | 27% | 26% |
Lives with grown children | 13% | 11% |
Lives with someone else | 1% | 1% |
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.
Table 79.4
Essential Aspect | Purpose |
Assessment | Provides information for determining effective ministry |
Networking | Determine avenues and resources that may be most effective to meet the needs of an older adult |
Nurturing | Provide a direct response to the care needs of individual older adults |
Advocacy | Accept responsibility to speak for older adults in basic needs, economic concerns, healthcare, housing and legal assistance |
Ministry | Provide prayer and fellowship in time of need |
Source: Heasty and Lakatos, 1998.
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).
Demographics of caregiving
Ethnicity
The graying demographic is found in all industrialized nations. Like the rest of the world, the US is faced with cultural differences in caregiving for older adults.
Rates of caregiving do vary according to ethnicity. Among Americans who provide informal care to others, 72% are white, 13% black, 12% Hispanic and 2% are Asian-Americans (National Alliance for Caregiving, 2012). Asian-Americans constitute the fastest growing minority group, and have the highest longevity (Young et al., 2002).
LGBT
In a 2010 study of caregiving characteristics among the lesbian–gay–bisexual–transsexual (LGBT) community, caregiving was nearly equal between genders. In this group, 22% of women and 20% of men report providing care to another adult on an ongoing basis. However, LGBT men report far more hours in caregiving than do men in the general population. LBGT men provide an average of 41 hours of care per week compared to 29 hours per week for men generally (Metlife, 2010).
Societal viewpoints
Societal pressures and the stigma of placing relatives or friends in skilled nursing or long-term care facilities place great pressure on informal caregivers to provide care to elders in home and community settings. There is a general belief that all senior citizens desire to grow old and eventually die in their life-long home. This, like most stereotypes, is not accurate for all persons (Smith & Feng, 2010).
When family caregivers turn to professionals for recommendations, the results are varied. Kane et al. (2006) pointed out that many professionals will direct families toward the type of care that the professional is most familiar with. The actual recommendation may have little to do with what would be the best option for the elder patient.
Families are increasingly faced with caregiver concerns for their elderly relatives. About 3.4% of the American public resides in a skilled nursing facility at any one time; another 3–4% reside in assisted living facilities, while 5–8% receive care through home and community based services (HCBS) (University of Maryland, 2005; AHCA, 2012).
The 1999 passage of the National Family Caregiver Support Program acknowledged the prominent public policy issue associated with aging, long-term care and informal caregivers (Administration on Aging n.d.). This legislation laid the groundwork for HCBS programs that focused funding needs on the frail elders, but ignored the needs of the caregivers.
HCBS put a face on the invisible caregiver network. The mission of HCBS is to keep elderly in their own homes and communities for as long as possible. HCBS are designed to decrease institutionalization. This legislation was the main force credited with the closure of nursing homes in favor of community alternatives.
A positive outcome of HCBS type care is monetary support for caregivers. Funding is now available to pay people who provide care, including families (Brown & Finkelstein, 2011). There are restrictions on who may be paid for what services, e.g. a spouse cannot be paid for providing ADL support, while a daughter may be reimbursed. Many caregivers would provide care whether paid or not.
Families face difficult pressures. With child-bearing occurring later in life, many dual-income, middle-age couples have school-age children at home. Further, these couples often have their own 70+-age parents and their 90+-age grandparents to worry about (Finkelstein et al., 2012). The stress of caregiving for the elderly falls squarely on the busiest of people in American society.
Current baby boomers are the major informal caregivers in the US. However, as this population ages, these same people may move into a role of requiring care. Finkelstein (2012) investigated the association between current caregiver status and planning for one’s own long-term care needs. The study found that, while caregivers are more likely to anticipate needing services in the future, they are not currently taking specific planning actions. Further, baby boomer caregivers expect that they will receive their own future elder care in their own homes, rather than in institutions.
Clinicians’ viewpoints
Elder-care clinicians recognize families as decision makers and short-term caregivers following acute incidents. However, the incidence of multiple comorbidities in elder family members increases responsibilities beyond most expectations.
Minnesota has examined this phenomenon. The 2005 report to the legislature completed by the Department of Human Services found that one in four adults in Minnesota were involved in some level of caregiving for older relatives. The dollar value of informal care far outweighs other sources of funding spent caring for Minnesota elders. This longitudinal study found that $6.84 billion was spent in 2004 for all care provided to Minnesota seniors. Medicare accounted for 7% of expenditures; Medicaid and other state programs 13%; out-of-pocket 11%; private insurance 1%; with 67% provided through informal care (MN DHS, 2005; Blumenstock, 2006).
Cognition as the decision driver
One of the most difficult issues for all caregivers is cognitive decline in their elder patients, notably, Alzheimer’s disease (Alzheimer’s Association, 2011). Families often find themselves trying to sort through a dizzying array of services and placements provided by mismatched and awkward systems.
The multiple roles of the caregiver
Caregivers have many roles to perform in supporting aging patients. Some have no idea how to help older adults reach maximal rehabilitation potential. A caregiver, for example, may view exercise as too hard, time consuming, or unnecessary. These caregivers may also do things that the older adult may be able to do independently.
Physical and occupational therapists involved with older adults and their caregivers need to patiently discuss rehabilitation plans and goals with both parties. The caregiver needs to know the value of therapy and improved independence for the older adult. The therapist may need to be direct in pointing out the harm of too much assistance from the caregiver in achieving meaningful functional gains for the older adult.
The following are descriptions of several of the roles that a caregiver may assume.
Medical advocate
Advocating for appropriate medical care is one of the first roles that an informal caregiver assumes. Caregivers begin this process through their role in patient transport, including bringing frail older adults to appointments, assisting in providing an oral history and accurately conveying the current abilities of their loved ones. Caregivers may even bear the burden for care-related decisions, including treatments implemented and even end-of-life decision making (Finkelstein et al., 2012).
Caregivers become increasingly responsible for making medical decisions as their elder patients’ physical and cognitive status deteriorate. For these reasons, it is very important for caregivers to fully understand the nature of chronic, debilitating conditions and treatment approaches, benefits, limitations, side-effects and alternatives. Since caregiving may be anywhere from 2 to 20 or more years, this is a long-term partnership that requires mutual respect between caregiver and patient.
Difficulties and disagreements often arise as caregivers assume this role. Children or others may have power of attorney or be legally appointed healthcare guardians; however, daily care decisions may be made by others, including onsite caregivers.
Clinical partner
In order for a frail older adult to achieve optimal rehabilitation potential, the caregiver needs to be seen as a clinical partner. Caregivers need to have realistic expectations about what benefits can be realized and how they contribute to their success or failure. If the caregiver does not fully understand and support the treatment plan, an older adult’s progress may suffer.
Therapists must effectively communicate with caregivers to ensure that care regimens comport with the needs and abilities of older adults and their caregivers. Overzealous treatment programs or too many exercises may result in failure for all involved. Focus on function, mobility and recognition of what life is like in the home setting will help each therapist to realistically assist the caregiver to be a clinical partner.
Personal care attendant
One of the most difficult tasks for caregivers is providing ADL support. Bathing and grooming may be delegated to caregivers who are ill-equipped to deal with another’s personal needs. Incontinence problems are disdainful to deal with, and are often a leading driver toward institutionalization. Feeding assistance and meal preparation are also burdensome tasks for many caregivers.
Forty-six percent of family caregivers perform medical tasks, while 96% provide ADL support (Gallup, 2011). Personal hygiene, grooming and transport in and out of bed are the tasks most often performed. Instrumental activities of daily living (IADL) center around providing vehicle transportation and grocery shopping (Gallup, 2011).
Guardian
Caregivers often take on the responsibility of preventing harm to a frail, older adult. ‘Parenting the parent’ is a term often used to describe this phenomenon. Guardian duties involve graded responsibility, depending on the cognitive and physical abilities of the elder patient.
Therapists should assist families in accessing alternate sources of care and respite. Community resources may be utilized to relieve some of this burden; elder visiting networks may also provide necessary companionship for home-bound elders.
Chief cook and bottle washer
A sudden acute illness causes most people to rush to the aid of ill or injured persons, bringing in food and offering household help. Unfortunately, the rush quickly turns to a trickle with a few or just one left to fill in the gaps of services required to run a home. For a married couple, it is the spouse that takes on most duties the two previously shared (National Alliance for Caregiving, 2012). In the case of a widow or widower, children step-in as long as possible, often supported by life-long family friends, including the faith-based community. Recognizing the long-term nature of this role early may help caregivers to plan in advance how this role is to be filled. Most communities have services that may be accessed for meals, house maintenance and yard work. Relinquishing these tasks to formal, paid or unpaid community providers may help manage caregivers’ burdens.
The stages of caregiving
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:
Stage 1 Coping with initial impact
Stage 2 Deciding whether a family member can take on a caregiver role
Stage 4 Considering residential placement
Stage 5 Caregiving during residential placement
Stage 6 Death of the patient – grief and relief
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