Journal of Gerontological Nursing

Family Involvement in Care for Individuals With Dementia Protocol

Lisa Skemp Kelley, MA, RN; Janet K Pringle Specht, PhD, RN; Meridean L Maas, PhD, RN, FAAN






Individuals with chronic illnesses pose care challenges for their families (Freudenheim, 1996; National Association of Caregivers, & American Association of Retired Persons, 1997). Because of the progressive nature of the cognitive and functional changes associated with Alzheimer's disease and related dementias (ADRD), caring for a family member with dementia brings particular challenges to care situations. Over the trajectory of care, families often are confronted with increasingly complex care needs. Family members usually find that at certain points in the progression of ADRD, their relative and the family are best served by soliciting help from formal care agencies (e.g., home care, assisted living, nursing homes). Although family members seek out assistance in the care of their relatives, most continue their interest in the ongoing care of their relatives (Ade-Ridder & Kaplan, 1993; Dellasega, 1991; Dellasega & Mastrian, 1995; Dellasega & Nolan, 1997; Fink & Picot, 1995; Friedemann, Montgomery, Maiberger, & Smith, 1997).

Following relocation of the individual with dementia to an institution, the goal of both family and formal staff caregivers is quality care. However, ideas about what caregiving means and how family members participate in care often differ between family members and formal care staff, and among and within families (Specht et al., in press). Consequently, family members often find participation in care of the individual with dementia difficult. For example, in long-term care agencies, families know they are dependent on staff to provide the majority of care for their relatives. However, many desire to be recognized by staff as important resources for providing the needed care (Kelley, Swanson, Maas, & Tripp-Reimer, 1999). While the gerontological literature encourages staff to view the resident's family as a resource for care (Anderson, Hobson, Steiner, & Rodel, 1992; Brubaker, 1987; Buckwalter & Hall, 1987; Spencer, 1991) and as a partner in care (Fox & Abraham, 1991; Harvath et al., 1994; Litwak, 1985; Maas et al., 1994; Pillemer, Hegeman, Albright, & Henderson, 1998; Spencer, 1991; Travis, 1996), family members and staff continue to report difficulties in sharing their caregiving roles (Bonder, Miller, & Linsk, 1991; Bowers, 1988; Duncan & Morgan, 1994; Johnson, Morton, & Knox, 1992; Kelley et al., 1999; Linsk, Miller, Pflaum, & Ortigara- Vicik, 1988; Rubin & Shuttlesworth, 1983; Shuttlesworth, Rubin, & Duffy, 1982; Tickle & Hull, 1995). This article provides an abstract of the research-based Family Involvement in Care (FIC) Protocol that provides an intervention guideline designed to promote negotiated partnerships between family members and formal care staff in providing care for residents with dementia.






The purpose of the research-based protocol is to provide guidelines for involving family members in the care of individuals with dementia through partnerships with formal staff caregivers. These partnerships can be made with informal and formal care providers within diverse care environments and are applicable for family and staff caregivers of individuals with all chronic illnesses. These environments may include home care, nursing homes, assisted living, day care, and hospitals. The ultimate goals of the protocol are to provide quality care for individuals with dementia and other chronic illnesses and to assist family members to find meaningful and satisfactory caregiving roles regardless of the setting.


Family Involvement in Care is an intervention by which family caregiver(s) and formal care providers participate in ongoing negotiation and establishment of a partnership (i.e., cooperative role relationship) to provide needed care. Although family caregiver(s) are expected to stay the same throughout the intervention, it is expected that formal care providers will change as the needs of the individuals with dementia change and as changes in the care environments occur. The essence of the FIC intervention is negotiation, clarification, and establishment of mutually satisfactory role expectations for family caregiver(s) and formal care providers, assisting them through role and environmental transitions to accomplish the needed care.


Families, including the family caregiver(s) and care recipient, are at risk for unsatisfactory role relationships when the care recipient requires more or different care than the caregiver is able to provide. A need to provide more or different care creates new role expectations for the caregiver and the recipient of care. The result is often role insufficiency for family caregivers. Role insufficiency for family members involves a lack of knowledge or skills to meet new or unknown expectations. Knowledge also may not include what resources are available and how to best access these resources. Unsatisfactory role relationships often result from role insufficiency. Care situations that put families at risk for role insufficiency and dissatisfaction with their roles and the care provided include (Allen & van de Vliert, 1984; Buckwalter & Hall, 1987; Kelley & Lakin, 1988; Maas & Buckwalter, 1990; Maas, Buckwalter, Kelley, & Stolley, 1991; Maas, Swanson, Buckwalter, Weiler, & Specht, 1998; Meléis, 1975; Peters et al., 1999):

* A new role.

* A change in care services or resources available.

* A change in care environments (e.g., relocation within or between environments).

* A change in care providers.

* Deteriorating mental or physical capacity of the care recipient.

* Deteriorating physical or mental capacity of the family caregiver.

* A traditional relationship between formal and informal caregivers that minimize role expectations for mutual involvement in caregiving.

* Institutional barriers (e.g., staffing, policies, procedures, environmental structures).

* Negative feelings about a new care environment.


People who are likely to benefit the most from use of this researchbased protocol include: individuals with dementia and their family members (in particular family members who have had the most intimate and continuing care responsibility for the individual with dementia); families who are new to the care setting (e.g., hospital, nursing home); and families who are new to the care provider. It is important to assess individuals with dementia, their family member(s), and the formal care situations prior to implementing the FIC intervention. Key FIC factors to assess are outlined in Table 1.


Family Involvement in Care is an intervention to facilitate quality care and assist family members to find meaningful and satisfactory caregiving roles. It is initiated by professional formal care providers on the initial (or first appropriate) contact with the family. The intervention equips formal care providers with a mechanism by which to develop a negotiated partnership between family members and formal care staff in providing care for residents with dementia. Family Involvement in Care is the development of cooperative role behaviors between family members of individuals with dementia and formal care staff. The cooperative role behaviors are primarily therapeutic and personal care activities, and may include other activities such as exercises, art, music, recreation, reminiscence, food selection and eating, environmental activities (e.g., aromatherapy), financial management, and surveillance of care activities. A critical component of the intervention is to help family members be involved in the type and frequency of activities in which they desire to participate.

The FIC is accomplished by implementing four key phases (Kelley, Specht, & Maas, 1999; Maas et al., 1994):

* Orientation.

* Education of all care providers.

* Negotiation and formation of the partnership agreement.

* Follow-up evaluation and renegotiation of the agreement.


First a formal care provider who will act as nurse care manager (NCM) for the family is identified. The NCM (in some settings the care manager may be a social worker) visits with the family to identify the primary family caregiver and other family caregivers, if they wish to participate. Orientation of caregivers to the care environment fosters an awareness of the environmental assets and deficits. This orientation includes a tour of the care environment (e.g., caregiver's home, nursing home), review of philosophy and policies of the setting, and a discussion of expectations and concerns.






The second phase is education of all caregivers regarding general principles of family caregiving, as well as principles of caring for individuals with dementia. Communication and visitation strategies for individuals with dementia are discussed. Role adjustments that often occur for the caregiver and the individual with dementia are reviewed. Therapeutic approaches to facilitate satisfactory care relationships in a new care situation are emphasized. Negotiation skills for partnership formation, maintenance, and termination are discussed, and role playing is used for family or staff members to practice negotiation. An overview of the FIC protocol is provided, as well as other resources that assist in implementing the family-staff partner role. These resources include brochures, pamphlets, videos, and an extensive Education Resource Manual (Manual available from the Family Involvement in Care Study, Meridean L. Maas, PhD, RN, FAAN, Principal Investigator, College of Nursing, University of Iowa, 101 NB, Iowa City, IA 52242-1121).

The education is carried out with the formal care providers and family members. Family member education may be conducted by the NCM with each family separately or in family group sessions. Although family and staff caregiver education are discussed together in this article, in practice the education includes preparatory and ongoing education for staff members involved in the FIC protocol. In the FIC research conducted by Maas and Swanson (1992) preparatory staff education was designed in three sessions with key objectives identified for each (Table 2).

Negotiation and Partnership

Negotiation and partnership formation is the third phase of implementing a partnership agreement. Family members and staff discuss, identify, agree on, and write down the goals and approaches for care of the individual with dementia. The negotiated partnership agreement specifically documents the family members' involvement, the staff care providers' involvement, and the anticipated length of time of the intervention (Figure 1).

Follow-Up Evaluation and Renegotiation

The fourth phase is follow-up evaluation and renegotiation of the Partnership Agreement. The frequency of evaluation and renegotiation is influenced by the care setting. For example, in the nursing home setting evaluation and renegotiation are achieved by at least weekly communication between the NCM and the family member. If the family member does not make a weekly contact, the NCM contacts the family member by telephone. Although the length of time for these contacts is often brief, frequent communications provide a critical time for the NCM to solicit feedback and suggestions from family members. In the nursing home environment, Partnership Agreements are renegotiated at least quarterly and more often if needed or requested by the participants.


To evaluate the use of this protocol among formal care providers, as well as family members and individuals with dementia who are at risk for role insufficiency, both outcome and process factors are evaluated. Approximately 1 month following nurses' or other health care providers' use of the protocol, the Process Evaluation Monitor (Figure 2) is used to determine an understanding of the protocol and to assess formal care providers' perceived support for implementing the protocol.

Figure 1 . Family-Staff Partnership activities agreement.

Figure 1 . Family-Staff Partnership activities agreement.

To document the effectiveness of the FIC intervention for each family, the FIC Process and Outcomes Monitor (Figure 3) and the FIC Nursing Outcomes Classification Monitor (Figure 4) are two outcome measures that may be used (Johnson, Maas, & Moorhead, 1999; McCloskey & Bulechek, 1999).

The FIC Process and Outcomes Monitor elicits specific information regarding FIC intervention, family satisfaction with care relationships, and the quality of care for the individual with dementia and its associated conditions. The FIC Nursing Outcomes Classification Monitor focuses on the family members' caregiving outcomes and status as a caregiver (Johnson et all, 1999).

Figure 2. Formal care provider process evaluation monitor.

Figure 2. Formal care provider process evaluation monitor.

Figure 3. Family involvement in care process and outcomes monitor.

Figure 3. Family involvement in care process and outcomes monitor.

Figure 4. FIC nursing outcomes classification monitor.

Figure 4. FIC nursing outcomes classification monitor.


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