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Family Involvement in Residential Long-Term Care

MELANIE N. G. JACKSON

JOSEPH E. GAUGLER

INTRODUCTION

Long-term care for older adults with chronic illness is generally provided by two sources: informal, or unpaid, caregivers and/or formal (i.e., paid) caregivers. The term informal/family caregiver refers to individuals who care for family members or friends requiring assistance due to illness or disability, whereas the term paid caregiver refers to health care providers and other professionals who are trained and paid for their services (Family Caregiver Alliance, 2001; White House Conference on Aging, 2010). For the purposes of this chapter, the roles of informal caregivers are a primary focus. Informal caregivers are diverse in terms of their kin relationship to persons requiring care (e.g., spouse, adult child), the amount and type of care actually provided (personal care, medication management, help with shopping or appointments), and living arrangement (living in the same household as the person receiving care or living some distance away from the care recipient). Informal care providers are often categorized as “primary” or “secondary” caregivers. A “primary” caregiver is defined as the one family member who endures the most of the family caregiving obligations for the individual, including completing everyday tasks and errands (Gaugler, Kane, & Kane, 2002). “Secondary” caregivers are those who often provide support and assistance to primary caregivers by providing psychoemotional, instrumental, and financial support. Secondary caregivers may become involved in various types of assistance for the care recipient but not to the same extent as the primary caregivers (Bourgeois, Beach, Schulz, & Burgio, 1996).

In 2010, there were approximately 52 million family caregivers in the United States who were providing care to an adult with limitations in daily activities, with about 61.6 million persons providing care at some point during the prior year (Coughlin, 2010; Feinberg, Reinhard, Houser, & Choula, 2011). Within the dementia care context (a disease that has received considerable attention for its informal care requirements), approximately 14.9 million adults serve as family caregivers for someone who has Alzheimer’s or a similar type of dementia (Alzheimer’s Association, 2013). This care is currently valued at approximately $450 billion overall and $216 billion for dementia caregivers (Alzheimer’s Association, 2013; Feinberg et al., 2011). Generally, there are more female caregivers than male caregivers, with the National Alliance for Caregiving and AARP (2009) estimating that 66% of caregivers are female. This number is slightly higher in the dementia care literature, with Liu and Gallagher-Thompson (2009) estimating that 73% of dementia caregivers are female. On average, dementia caregivers are 48 years of age.

Informal caregivers often help with one or more personal activities of daily living (PADLs), which includes assistance with getting out bed, getting dressed, incontinence, bathing, and feeding. Family caregivers also help with instrumental activities of daily living (IADLs), such as managing medication, shopping, housework, meals, and managing finances. The number of hours families dedicate to informal care is also extensive; according to the National Alliance for Caregiving (2015), informal caregivers provide approximately 21 hours of assistance per week. Dementia caregivers spend an average of 40 or more hours per week providing informal care (Liu & Gallagher-Thompson, 2009). In addition to providing care to a relative, approximately 60% of informal caregivers are also employed on a full- or part-time basis and often suffer work-related difficulties because of these dual roles (Family Caregiver Alliance, 2001). Family caregivers frequently report having to rearrange their work schedules, decrease hours at their job, or take unpaid leave in order to meet caregiving responsibilities. Additionally, dementia caregivers suffer from more severe health complications, including an increased risk for hypertension and poorer immune responses, than nondementia caregivers (Liu & Gallagher-Thompson, 2009).

Assuming a caregiving role for a family member prompts feelings of burden, defined as “a multi-dimensional response to physical, psychological, emotional, social, and financial stressors associated with the caregiving experience” (Etters, Goodall, & Harrison, 2008, p. 119). Case Study 4.1a in this chapter provides an example of a family experiencing the caregiving role. Perceived burden on the part of caregivers is associated with poor outcomes, such as depression, illness, and decreased quality of life (Etters et al., 2008). More specific stressors that caregivers report experiencing, such as feeling overloaded by caregiving responsibilities and feelings of being captive in the caregiving role, are also associated with depressive symptoms over time. Additionally, depression in the caregiver can lead to depression in the relative with dementia, resulting in even more impaired functioning in the care recipient beyond that associated with the disease itself (Liu & Gallagher-Thompson, 2009).

THE CAREGIVING CAREER AND RESIDENTIAL CARE PLACEMENT

Many factors are involved in adopting the role of family caregiver, and the experience involves different stages and experiences. In the literature, informal caregiving is sometimes conceptualized as a “caregiving career” (Parminder et al., 2004). This conceptual framework attempts to provide a more complex understanding of caregiving and describes the family caregiving process as a dynamic one in which the caregiver experiences a number of “transitions,” or turning points, as the chronic disability of the older care recipient progresses and generally worsens (Parminder et al., 2004). Various transitions include preparation for and acquisition of the caregiver role, enactment of the associated tasks and responsibilities, and eventual disengagement from the role.

Using Montgomery and Kosloski’s (2000) model of caregiving transitions, we will explore the various ways that family members can experience the caregiving career through the case of Maryann. Maryann lives in the city neighboring that of her mother, Cathy. Maryann is one of four children, but she is the only one who still lives in the same state as their mother. Recently, Maryann has been helping her mother with various tasks. She has been taking her to her doctor appointments, helping her with chores in her home, and regularly does her shopping. Maryann is in the first stage of the caregiving career, as she is beginning to provide tasks associated with caregiving (i.e., she is caring for her mother in a way that is not typically associated with the role of adult child).

Maryann has been providing these tasks for a few months now, and during a discussion with one of her sisters about their mother, Maryann begins to acknowledge that her relationship with her mother is different compared to the relationship that her siblings have with their mother. In addition to her role as an adult child, she begins to think of herself as her mother’s caregiver. Maryann is entering the second stage of the caregiving career. During this stage, Maryann begins to acknowledge that her activities go beyond the normal scope of familial roles and she begins to self-identify as a caregiver.

As time progresses, Cathy becomes increasingly dependent on Maryann for additional help. Maryann moves her mother into her home so that she can provide assistance with more personal care such as feeding and monitoring her mother. At this point, Maryann is providing a great deal of assistance to her mother and feels torn between her roles as child and caregiver to her mother. When the care needs of the care recipient intensify, relatives find themselves performing tasks that are significantly outside the realm of typical family relationship exchanges. At this point, Maryann may begin to identify herself as the primary caregiver; this shift in identity represents the third stage of the career.

Eventually, Maryann feels overwhelmed with the responsibility of caring for Cathy and begins considering other options for assistance. Maryann considers placing Cathy in an assisted living facility. The consideration of formal service use represents the fourth stage of the career, at which point the caregiver considers placement options such as assisted living facilities or nursing homes. The fourth stage can last for an extended period of time as the caregiver continues revisiting the idea of placement.

As shown in the example, residential care placement can become a more likely option as the care needs of a relative intensify (Montgomery, Rowe, & Kosloski, 2007). However, admitting a relative to a residential care facility is not a decision that families make easily. Family caregivers often express reluctance to place their older relative in a nursing home. The focus of this chapter is to examine this key transition point in the caregiving career.

Placing a relative in a long-term care facility is a very emotional experience for caregivers, and mixed feelings regarding the placement decision are common. Although many caregivers might express guilt, sadness, anger, and sense of failure and loss, others express feelings of relief and peace of mind. There can also be a great deal of uncertainty during the transition, with family members experiencing ambiguity regarding the shift from a direct care role to a more indirect supportive role (Reuss, Dupuis, & Whitfield, 2005; Specht, Reed, & Maas, 2005).

Caregivers report feelings of turmoil related to nursing home placement. Case Study 4.1b follows Pauline and Mary as they experience the transition of placing Robert in a nursing home facility. These feelings are associated with uncertainty regarding nursing home expectations, the actual process of placing a relative, and getting everything in order for the move. Some caregivers also experience distress when they feel that they have little control over the decision to place their relative, as health care professionals sometimes decide to admit an individual without family involvement. Once a relative has been placed, family members often go through a period of adjustment. This adjustment can include letting go of previous ideas of what the nursing home experience would be like, accepting the fact that their relative will never return home, and adjusting expectations of what their relative’s life would be like in a nursing home. Other relatives report feeling happy and relieved once their relative was placed, and they begin to accept that they made the best decision (Cheek & Ballantyne, 2001; Pearson, Nay, & Taylor, 2004; Ryan & Scullion, 2000). These conflicting emotions can be very challenging for families, and as a result, many caregivers make major personal sacrifices in order to keep family members at home for as long as possible (Strang, Koop, Dupuis-Blanchard, Nordstrom, & Thompson, 2006).

TYPES OF LONG-TERM CARE FACILITIES

In the context of this chapter, the interaction between “informal” (family involvement) and “formal” care (assistance provided by direct care workers) often operates in two distinct residential care settings: nursing homes and assisted living facilities. Nursing homes are a residence for people who are too frail or sick to live independently (Assisted Living Facilities). Nursing homes are likely to serve a chronically ill, functionally dependent segment of the population (Borson, Liptzin, Nininger, & Rabins, 1987). Residents suffering from multiple degenerative diseases and impairment in the capacity for self-care are common in nursing homes. Traditional models of nursing homes fit the description of an institution in many more ways than it fits the definition of a home. Nursing homes typically involve an emphasis on uniform treatment and medical issues, much like a hospital environment (Kahn, 1999). Residents and staff are usually on fixed schedules and can be very rigid in the services provided to residents. For example, nursing homes receiving funding from Medicaid are required to provide a range of services, including, but not limited to, dispensing and administering medication, room and bed maintenance, and routine personal hygiene items and services. Nursing homes can charge for other services such as a private room, unless it is required for medical purposes, telephone, television, and radio, and personal and cosmetic items and services in excess of what is included in basic service (Medicaid Program, 2012). The institutionalized setting of nursing homes has often been criticized for being less individualized and essentially stripping residents of their uniqueness as individuals (Drew, 2005).

The AARP proposed a definition of assisted living facility in 1992 as a group residential setting that is not licensed as a nursing home where personal care and routine nursing services are provided to meet the requirements of the resident. Definitions have continued to evolve because uniform standards across states do not exist and consensus could not be reached regarding which qualities of assisted living were required and which were recommended (Wilson, 2007). By 2008, Medicare defined assisted living facilities as a “general term for living arrangements in which some services are available to residents who still live independently within the assisted living complex” (Medicare Program, 2012). Assisted living settings are privately occupied apartments with features such as a full bathroom, kitchenettes, and locking doors where the residents control their space, furnishings, time of activities and care plans. Assisted living settings are recognized as residential options that bridge home care and more intensive skilled care provided in a nursing facility (Gaugler & Lindahl, 2011). These facilities vary according to size, services offered, and the degree of care residents require. Offering a mix of security and independence, assisted living facilities aim to provide supervision, assistance, and personal care services (Hawes, Phillips, Rose, Holan, & Sherman, 2003; Hawes, Rose, & Phillips, 1999; National Center for Assisted Living, 1998). Both nursing homes and assisted living facilities can come at high costs for families. Exhibit 4.1 describes how families fund long-term care.

According to the Centers for Disease Control (2010), there were approximately 1.5 million residents in nursing homes across the country, compared to an average of 733,000 residents in residential/assisted living facilities. In both facilities, the majority of residents are female and over the age of 65. Within nursing home facilities, approximately 52% of residents require care with at least four activities of daily living (ADLs, or help needed to bathe, eat, use the bathroom, get in and out of bed, or walk around), whereas approximately four in 10 residents within assisted living facilities required assistance with at least three ADLs (Caffrey et al., 2012; Centers for Disease Control and Prevention, 2004; Centers for Medicare & Medicaid Services, 2012).

EXHIBIT 4.1 How Do Families Fund Long-Term Care?

FAMILY STRUCTURE

Although some differences exist in family structure across residential care settings, results from national surveys suggest that the typical resident of both nursing homes and assisted living facilities is white, female, and widowed (Hawes, Phillips, & Rose, 2000; Kasper & O’Malley, 2007). More recent studies that include data on key family variables (e.g., marital status, living children, and traveling distance of the nearest family member) also suggest that approximately 15% or more of residents had spouses, and 80% or more had adult children who remained involved in care. Additionally, a few assisted living residents resided with a spouse (around 7%). Having a spouse or adult children who live nearby may serve as sources of informal support. It is not clear whether residents who have no spouse or family members available have all of their care needs (which not only include care for ADLs but emotional support as well; see Exhibit 4.2) met through the formal support of the facility. It is important to note that these findings are dated, and updated demographic profiles are needed; given the changing nature of long-term care in the United States (particularly the rapid emergence of assisted living in many states), it is not clear how many potential family members current residents have available to provide help and support.

FAMILY INVOLVEMENT IN LONG-TERM CARE

Initially, researchers characterized the residential entry of a relative as a time of intensified isolation from families during which depression on the part of relatives was a common experience (Cath, 1972; Jones, 1972). Additional early research found the involvement of family members to be interfering and disruptive (Bates, 1968). Subsequent inquiry found, however, that family members remained meaningfully involved in the lives of their relatives after residential entry, although family care distinctly changes after a relative’s move into a nursing home or assisted living facility.

Family involvement has been described as multidimensional and can include a range of components such as visiting, provision of personal or instrumental care, socioemotional support, monitoring, decision making, and advocacy (Gaugler, 2005; High & Rowles, 1995). Visiting refers to in-person contact with relatives in a residential care setting. Family members sometimes continue to provide personal care to their relatives, which includes ADL help such as grooming, helping the relative walk, helping the relative eat, although in many instances facility staff may assume the bulk of these responsibilities. Families may also provide instrumental care or assistance with laundry, cleaning, organizing space, and preparation of food and beverages. Another dimension of family involvement is socioemotional support. Socioemotional support can include talking with the resident, holding hands with the resident, and engaging in social activities (High & Rowles, 1995).

Family involvement in residential settings can interact in various ways with the formal care offered by direct care workers. Supplementation refers to the use of formal support to complement ongoing informal care tasks or activities but does not replace informal care provision (Edelman, 1986). Alternatively, substitution occurs when formal care (such as that provided by residential care facility staff) fully replaces certain dimensions of care once provided by informal/family caregivers (Greene, 1983). Another pattern of care that can occur is kin dependence. Kin dependency occurs when informal caregivers continue to provide the bulk of assistance even with the introduction of formal support (Lyons & Zarit, 1999). Dual specialization occurs when direct care staff provide personal, hands-on care, and family members remain responsible for psychosocial support (Dobrof & Litwak, 1977; Gaugler, 2005; Litwak, 1985).

Family members also provide additional types of assistance that are not directly provided to the relative but represent involvement on the part of family caregivers, such as monitoring, advocacy, and decision making. These types of assistance are based on “preservative care,” in which the role of family members is to help maintain the identity of the relative via engagement with facility staff or other activities (Bowers, 1988). Monitoring may include supervising or collaborating with staff in order to maximize the quality of care provided to the relatives (e.g., sharing personal or historical information about the relative to the staff). Advocacy is defined as active support and recommendations for direct improvement of patient care (National Alliance for Caregiving, 2006). Some examples of this in the family caregiving literature include family members’ reporting abuse to authorities, promoting family understanding of nursing home policies to other relatives, and initiating actions to ensure that good staff/family relations exist. Family members also continue to have high levels of involvement in the decision-making process of the relative. This has been defined in the literature as progressive surrogacy (High & Rowles, 1995), and refers to family members remaining involved in numerous decisions regarding daily living, such as decisions about physical environment and social environment, treatment and health care decisions, and crisis and end-of-life decisions. With progressive surrogacy, as decision-making ability declines, residents progressively cede some of these decisions, especially everyday decisions, to family members and to staff members who assume the role of surrogate family.

Visiting remains an important way to measure family involvement, and family members visit often and typically go to great efforts to visit, including traveling long distances (Chene, 2006; Ross, Rosenthal, & Dawson, 1997). The act of visiting a relative serves a multitude of purposes. Family members associate visiting their relative with showing love and devotion, assisting their relative, providing assistance to staff, and as an act of duty and obligation. Wives report that visiting their husbands provides a way to facilitate connectedness and to prevent them from feeling neglected at the facility. Visiting can be emotionally satisfying, but it can also be difficult for relatives. Some wives reported that visiting can be emotionally draining when they have to explain to husbands why they could not return home, thereby increasing their guilt (Ross et al., 1996).

Families visit frequently both in the beginning of residential placement and after their relative has been at the facility for some time. A study in 2001 by Port and colleagues found that 2 weeks following residential entry, significant others had contact with residents approximately 19.9 times. In other published research, Ross, Rosenthal, and Dawson (1997) conducted a longitudinal study of wives of nursing home residents and reported extensive visiting, with 80% visiting their husbands several times a week or more and 20% visiting every day, with visits lasting 2 to 4 hours. After 9 months, there was still no significant reduction in the number of visits.

While visiting, family members engage in various forms of socioemotional support, advocacy, monitoring, and even actual direct care in some instances (e.g., bathing, feeding, and dressing and grooming their relative). Because of a common shift in responsibilities away from most direct care tasks, family members have more time to devote to the relationship with their relative and to enhancing their quality of life. For example, family members may engage in conversations with their relatives about current events and about the stressors they experience. Family members may also take relatives out of the nursing home for social visits. Families may also assume the role of advocacy for the well-being of the relative in order to ensure that his or her needs are met. During visits, family members can represent the relative’s unique contribution to the new home. They can ensure that staff is aware of their relative’s preferences, personal history, and values and in so doing inform care staff of the most appropriate way to care for their relative. Additionally, family members may use their visiting time to monitor the standards of their relative’s care and provide feedback to facility staff (Austin et al., 2009; Davies & Nolan, 2006).

Research on family involvement in assisted living examines many of the same types of family involvement as in nursing homes. Case Study 4.2 demonstrates some family experiences when visiting nursing homes. However, some of these behaviors look different in assisted living facilities. Exhibit 4.2 illustrates how family involvement differs in assisted living according to the various types of informal/formal care models described (see Gaugler & Kane, 2007). Residents in assisted living often receive frequent phone calls (often weekly or more) from family members. During visits, family members are engaged most frequently in providing socioemotional help. Families also provide some types of direct care but on a more modest basis than is provided to relatives in nursing homes (likely due in part to fewer care needs on the part of assisted living residents). Thus, either assisted living residents can conduct some of the daily living tasks themselves or perhaps family members were not as actively involved before the move to assisted living occurred. When comparing some of the differences between nursing homes and assisted living, family members of nursing home residents appeared more likely to engage in instrumental assistance (Gaugler & Kane, 2001, 2007; Leon et al., 2000), family interaction (Pruchno & Rose, 2002), and monitoring of cognitively impaired residents’ medical, emotional, and financial well-being (Port et al., 2005).

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