Family Involvement in Care Study

Theoretical Framework

This research program is guided by the general theoretical framework of person-environment fit and interaction (P-EF/I) (Kahana, 1975; Lawton, 1975a; Parr, 1980). Hall and Buckwalter's (1987) Progressively Lowered Stress Threshold Model and Role Theory (Hardy & Conway, 1978; O'Neill & Ross, 1991) supplement the general theoretical framework to provide specific underpinnings for the FIC intervention and its hypothesized linkages with outcomes of family, staff, and residents with Alzheimer's disease.

Person-environment fit and interaction (P-EF/I) are conceptualized along a trajectory of changes over time for residents with Alzheimer's disease, family members, and institutional caregivers. The theory emphasizes the importance of interactions between the individuals and the environment (Lawton, 1975a). Role theory points to the interface of individuals' roles as an important aspect of P-EF/I. For persons with Alzheimer's disease, abilities to receive, process, and cope with environmental cues and stimuli are increasingly compromised over the deteriorating course of illness trajectory (Doyle, Dunn, Thadani, & Lenihan, 1986; Gillies, 1986; Lawton, 1975a; Lawton, 1975b).

The theory of person-environment fit/interaction also assists with understanding the problems faced by family members of persons with Alzheimer's disease (Brody, Dempsey, & Pruchno, 1990; Wilson, 1989; York & Calsyn, 1977). As Alzheimer's disease changes the ability to interact and manage the environment, the victim's role in the family and in all social arenas changes with increasing dependence for activities of daily living (Bowers, 1987; Johnson, 1989).

For family, roles change with a requirement to assume increasing responsibility for the person with Alzheimer's disease (Klein, Dean, & Bogdonoff, 1967). When the person with Alzheimer's disease remains at home, one or more family members assumes the major role of caregiver. However, when it becomes necessary for the Alzheimer's disease victim to be institutionalized, the role of the family member(s) changes from primary caregiver to visitor in an environment where staff are the primary caregivers. Thus the family member role changes over time on a trajectory from insider with high control focused on protective care to outsider with low control in care that largely involves instrumental tasks (Bowers, 1987; Johnson, 1989).

Conversely, institutional staff caregivers are low control outsiders with occasional secondary caregiver roles when the person with Alzheimer's disease is living at home. Over time and following permanent institutionalization, however, staff caregivers become insiders with high control over care that tends to assign priority to instrumental care tasks.

Interaction with the institutional environment is often stressful for the family member, requiring a difficult role transition (Brubaker, 1986). As the protective primary caregiver role is relinquished by the family caregiver, role adjustment is required. Disruptions of family caregivers' interactions with the environment occur as their roles interface with the institution, staff caregivers, the relatives
with Alzheimer's disease, and other family members and associates. These disruptions are viewed as sources of stress for the family caregiver. Stress occurs when the environment fails to fulfill the expectations the family member has of the nursing home and staff (Schmidt, 1987). Thus, family dissatisfaction is viewed as a manifestation of stress in response to discrepancies between reality and expectations (role conflict, role ambiguity), whereas satisfaction reflects congruence (Bohland & Davis, 1979).

The family caregiver experiences the difficulties of relating to the relative with Alzheimer's disease who is declining cognitively and functionally (York & Calsyn, 1977). Dealing with the hassles and burden of caring for the agitated relative and grieving the losses of the familial relationship are continued sources of stress when relatives with Alzheimer's disease are institutionalized (George & Gwyther, 1986; Harper & Lund, 1990; Stephens, Kinney, & Ogrocki, 1991; Zarit, Todd, & Zarit, 1986). Hassles have been documented to contribute significantly to the prediction of psychological distress (Monroe, 1983). Burden is conceptualized as a stressful process initiated by the hassles of caregiving and involving responses of guilt, embarrassment, anger/resentment, and anxiety/depression. Concepts central to role theory that provide direction for framing the concept of burden include role conflict, overload, ambiguity, and changes in role expectations. Family members also experience frustration, resentment, and anger from interactions with their relatives with Alzheimer's disease (Farkas, 1980; Rosenthal & Dawson, 1991), which in turn produces stress and lowered satisfaction. The person with Alzheimer's disease is often a source of stress for family caregivers because of hassles and burdens of continuing the caregiving relationship following institutionalization. The relative with Alzheimer's disease may become upset or behave inappropriately during family member visits, making caregiving difficult. Guilt, embarrassment, anger, resentment, and depression are common responses of family members (Chenoweth & Spencer, 1986). Some family members feel that they are captives of their caregiving role and feel acutely the losses of companionship, intimacy, and social activities that have accrued because of their loved one's illness and institutionalization (Klein, Dean, & Bogdonoff, 1967).

Adaptation to the institutional environment begins with admission for both the resident and their family members. This adjustment is complicated by the institutional bureaucracy, requiring the resident and family member to assume unfamiliar and unnegotiated roles which are determined by the nursing home (Dietsche & Pollman, 1982; Montgomery, 1982; Spencer, 1991). The resident may be perceived by the staff as "theirs," with the family seen as having entrusted the resident to the nursing home staff (Clifford, 1985). Often family and staff assume a competitive or adversarial relationship as the family system and institutional bureaucracy interface (Dietsche & Pollman, 1982).

Recent research reported by Schwartz and Vogel (1990) suggests that interaction between family of the residents with Alzheimer's disease and the nursing home environment has considerable meaning in directing interventions for families and friends of residents with Alzheimer's disease using this theoretical framework. Conflicts arise when either family or staff over- or underestimates their own roles or when overlaps in roles or responsibilities exist (Schmidt, 1987). Interventions to increase interaction between staff and families lead to shared understanding and improved person-environment fit. Particularly noteworthy is the finding by Schwartz and Vogel (1990), which was supported by Phase II findings (Mass, Buckwalter, & Kelley, 1991) that even though there was a high degree of agreement between families, friends, and staff on roles in caring for the residents with Alzheimer's disease, families wanted more involvement in "activities" and "personal care." Additional support can be obtained from Schmidt (1987) who concludes that conflict between spouses of residents in long term care and staff can be helped by an ongoing spousal involvement.

Staff stress from the burden of caring for persons with Alzheimer's disease is suggested by the theoretical framework. Burden is conceptualized as including the daily hassles of caring for progressively deteriorating Alzheimer's disease victims and the emotional responses (e.g., guilt, anger, frustration, anxiety) that can be associated with the very difficult care problems that persons with Alzheimer's disease usually present. Staff often perceive their task of caring for the person with Alzheimer's disease as stressful, given the knowledge and people resources available to provide the care (Beierholm, Tiselius, & Ek, 1988; Heine, 1986; Hare & Skinner, 1990; Hare & Pratt, 1988; Numerof & Abrams, 1984). Role conflicts between staff and families and the resulting negative attitudes about families that often accrueare further sources of staff stress and dissatisfaction.

Finally, the theoretical framework guides interventions for residents with Alzheimer'sdisease and points to the importance of family and staff and their relationships in the resident's environment. The Progressively Lowered Stress Threshold Model (PLST; Hall & Buckwalter, 1987), which emphasizes structuring the environment of residents with Alzheimer's disease so that stimuli are managed and reduced in concert with the resident's losses of cognitive and functional abilities, focuses attention on family and staff caregiving roles that are critical throughout the residents with Alzheimer's disease's illness trajectory. Conflict among family and staff, role ambiguity, and burden of family and staff and the ineffective use of family and staff as resources for care can limit the ability to optimally manage environmental stimuli for the residents with Alzheimer's disease. The FIC intervention, derived from the framework of Person-Environment Fit/Interaction, role, and PLST concepts, specifically addresses problems experienced by families, staff, and residents.
The FIC intervention focuses on enhancing family member role transition to a new negotiated partnership role with staff, resolving family-staff role conflict, and increasing knowledge and people resources for caregiving in order to reduce stress and increase satisfaction of family and staff caregivers. The achievement of these outcomes for family members and staff are intended to enable a more therapeutic environment for persons with Alzheimer's disease in special care units.

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