estimated 65.7 million Americans provided unpaid care to one or more disabled or ill family members or friends in 2009 (National Alliance for Caregiving & AARP, 2009
). This provision of care does not come without costs. An extensive body of literature documents the link between caregiving and a variety of negative mental and physical health outcomes (Schulz & Sherwood, 2008
Over the past two decades, considerable efforts have been made to develop and test the effectiveness of a range of support services for family caregivers (Goy, Freeman, & Kansagara, 2010
). These caregiver interventions have included respite services (Zarit, Stephens, Townsend, Greene, & Leitsch, 1999
), psycho-educational skills training (Bourgeois, Schulz, Burgio, & Beach, 2002
; Coon, Thompson, Steffen, Sorocco, & Gallagher-Thompson, 2003
), cognitive behavioral therapy or family counseling (Gonyea, O’Connor, & Boyle, 2006
; Mittelman, Haley, Clay, & Roth, 2006
), or a combination of services (Belle et al., 2006
). Two observations can be made about findings that have emerged from these studies. First, the most promising findings regarding the positive impact of support services on caregivers have emerged from studies that include a relatively comprehensive set of multiple support services (Belle et al., 2006
). Second, it is clear that the programs are most effective for reducing caregiver burden when the services are provided in sufficient quantities and targeted to specific needs. Unfortunately, even with this information from numerous studies of caregiver interventions, few resources exist to help guide care managers or other family specialists to formulate decisions about the correct type of services and the most appropriate time for initiating service use. As a result, there is a tendency for service providers or care managers to offer caregivers the services that are available in their communities with little knowledge about which services are most needed and most likely to be used by and benefit the caregiver at that point in time. Unfortunately, this practice creates the circumstance that many caregiver services go unused, and/or they are provided at a point in time that is too late to fully benefit the caregiver or the care receiver (Montgomery, 2002
The Tailored Caregiver Assessment and Referral®
) protocol is an efficient evidence-informed process that was developed to assist care managers and practitioners working with family caregivers to meet the unique needs of individual caregivers (Montgomery & Kwak, 2008
). The protocol reflects current knowledge about caregivers and caregiver interventions and is grounded in the Caregiver Identity Theory
articulated by Montgomery and Kosloski (2009)
. The major tenet of the Caregiver Identity Theory
is that caregiver identity discrepancy, defined as a disparity between the care responsibilities that he or she is assuming and his or her identity standard, is a major source of caregivers’ stress.
This conceptualization of the distress process builds upon the work of Burke (1991
and his colleagues who consider identity maintenance to be a continuous process in which identity standards are applied to the self in a social role. Identity standards are personal norms that serve as reference points for self-appraisal in a role. These personal norms are influenced by social, cultural, and familial norms. Consistency between an individual’s identity standards and appraisal of behaviors maintains identity stability. An inconsistency between identity standards and behaviors challenges identity, resulting in stress and, at times, a transition to a different social role and new identity standard (Burke, 1991
). Caregiver identity theory suggests that the caregiving role emerges out of a prior familial role, most often the role of child or spouse. As a caregiver assumes greater responsibilities for care he or she experiences an identity change in relation to the care recipient and a change in identity standards. This change process is dynamic and continues as the tasks and responsibilities of the caregiver change in response to the changing needs of the care recipient and care context. For most caregivers, the change in role identity is a slow insidious process that proceeds in stops and starts, ultimately resulting in a significant shift from one’s initial role relationship to the care recipient. For example, a daughter may easily assist her mother who has some difficulty paying bills or shopping without experiencing stress. As the disease progresses, the needs of her mother and the resultant demands placed on the daughter increase. As this process unfolds, the daughter’s activities gradually increase in intensity and become discrepant with the norms that the daughter has internalized with respect to her role as a daughter. Simply put, her activities are now discrepant with her previous role identity, that is, identity discrepancy.
This identity discrepancy can be manifested in at least three distinct areas of burden: objective burden, relationship burden, and stress burden, as well as depression (Savundranayagam & Montgomery, 2010
). Reflecting these assumptions, the TCARE®
protocol was designed to help caregivers by systematically targeting identity discrepancy, the three domains of burden, and depression (Montgomery & Kwak, 2008
Essentially, TCARE® is a triaging mechanism that empowers family caregivers to make informed decisions by providing them with critical information about the care context, their own strengths and needs, and resources available to address their needs. The protocol outlines a six-step process for assessing the caregiving context and caregivers needs, creating a care plan and providing care managers with a set of tools to implement the process. The six steps are to (a) conduct an assessment using a 32-item standardized form; (b) transfer key information gained from the assessment process to a summary sheet that enables care managers to calculate scores for key measures and interpret them using distributions that have been established through previous studies; (c) follow a decision algorithm to identify goals, strategies, and resources that are targeted to the caregivers needs and preferences and record these on a care consultation worksheet; (d) consult with the caregiver to review and discuss the assessment results, suggested goals, strategies, and resources and mutually agree upon a care plan; (e) create a care plan that is a written record of decisions made during the care consultation and includes detailed information for implementing the plan; and (f) conduct a follow-up assessment at three-month intervals. A computer-assisted version of the protocol is available for care managers to use.
A key feature of the TCARE® protocol is the decision algorithm that enables care managers to integrate extensive information about the caregiver and care context to create a care plan tailored to the unique needs of the caregiver. The algorithm, which is grounded in the caregiver identity theory, leads to the identification of (a) an appropriate intervention goal, (b) strategies for reaching that goal, and (c) a generic list of services that is consistent with the identified strategies. The three possible goals for a caregiver are to (a) continue in his or her current identity as a caregiver by “stretching” that identity to include current caregiving activities, (b) reduce the caregiving aspects of his or her identity to bring his or her identity into line with what he or she is actually doing, or (c) further embrace an identity as a caregiver to bring his or her identity into line with what he or she is actually doing. For many caregivers, the algorithm also identifies a health goal, which is uniquely tied to the strategy of improving health and the recommendation of medical or behavioral health evaluation. The five possible strategies for achieving the selected goal include (a) changing the caregiver’s personal norms or rules pertaining to care responsibilities and interactions with the care recipient, (b) reducing the workload, (c) enhancing positive self-appraisal, (d) reducing emotional stress, and (e) improve overall health.
The 44 pathways through the decision algorithm reflect various combinations of caregivers’ scores on measures of three types of burden, intention to place, depression, and identity discrepancy. When appropriate, the algorithm also incorporates additional information about the care context to enable the care manager to make professional judgments regarding the capacity of the caregiver to provide necessary care in a safe manner.
A step-by-step illustration of the application of the decision algorithm for two caregivers with different combinations of scores is provided in . The figure depicts the pathways for the two caregivers leading to the goals, strategies, and examples of the types of services that would be included on an initial care plan. The process starts on Map D, which includes the decision algorithms for caregivers who score medium or high on objective burden but low on relationship burden. The second step is to examine the depression score. If a caregiver scores medium or high on the depression measure, as did Caregiver B, the goal to improve health is established. The third step in the process is to examine the caregivers’ scores on the measure of identity discrepancy. Caregiver A has a low level of identity discrepancy and therefore the goal selected for her is to help her “maintain her current identity.” Strategies and services are recommended that will help lower her level of objective burden by easing her workload. In contrast, Caregiver B has a high level of identity discrepancy, which stems from the fact that she inaccurately perceives the care receiver to be more dependent than he actually is. In this case, the caregiver is engaging in a level of care that is fostering overdependency on the part of the care receiver. Strategies and services are recommended to help her let go of caregiving tasks and thereby align her activities with an identity that is more in keeping with her primary role as a wife. The last step of the process for both caregivers is to examine stress burden to determine whether services are needed to help alleviate the caregiver’s anxiety, which is the case for Caregiver B but not Caregiver A.
Example of decision algorithms and care plans for two caregivers.
The generic service types listed in are drawn from the TCARE® Guide for Selecting Services which is a catalogue of over 90 types of resources grouped into 15 major categories that have been identified as potentially useful for supporting caregivers. The guide provides a cross walk between five strategies for supporting caregivers and each type of resource that could be used to support the strategy. Care managers hone and tailor the initial list of suggested services to reflect the caregiver’s preferences and the availability of services within the community.
We report findings from preliminary data of the randomized controlled study of family caregivers that examined the effects of the TCARE® protocol on caregiver outcomes. We hypothesized that caregivers served by care managers using the TCARE® protocol would experience lower levels of identity discrepancy, objective burden, relationship burden, stress burden, and depressive symptoms over time when compared with caregivers served by care managers following their usual practices. We also hypothesized that there would be a difference between the two groups in the caregivers’ expressed intention to place a relative in a nursing home facility.