Consensus Management Model for Families Caring for a Loved One with Dementia

The dramatic increase in the number and proportion of the elderly in the U.S. population is significantly impacting the American family. This trend is expected to continue well into the next century as the "baby boomers" enter the ranks of the old. Currently, an unprecedented number of individuals - two-to-three million by one estimate - are providing care for one or more aging family members (Stone, Cafferata, & Shangl, 1987).

More than half of family care giving is intergenerational; that is, adult children caring for aged parents (Olson, 1994). Among filial caregivers, perhaps those who experience the greatest stresses are those who care for parents who are victims of a dementia. Most often this is Alzheimer's Disease, a chronic condition characterized by a slowly progressive process that includes both cognitive and functional deterioration as well as a variety of behavioral disturbances. In this context, care giving for a loved one with dementia may be intense, stressful, and fraught with conflict.

The tasks shouldered by adult children caring for elderly parents with dementia are numerous and varied, and often change with the course of the dementing illness. Caregiving can include such activities as running errands, providing emotional support, managing disturbing behavior, and remaining ever-vigilant (Barber, Fisher & Pasley, 1990; Gold, Cohen, Shulman, Zucchero, Andres & Etezad, 1995). Given these overwhelming responsibilities, caring for loved ones with dementia is often associated with levels of depression, anxiety and anger, poorer self-reported health, as well as higher use of psychotropic drugs (Schulz, O'Brien, Bookwala, & Fleissner, 1995). As a result, family caregivers are often described as "hidden patients" in need of outside assistance and support aimed at improving their own health and well-being (Gallagher-Thompson, Coon, Rivera, Powers & Zeiss, 1998).

In response to the needs of family caregivers, researchers and service providers have been exploring a variety of interventions designed to help individuals adjust to and effectively cope with caregiving roles and situations. In fact, several informative reviews of these interventions and their effectiveness have been published in recent years (Bourgeois, Schulz & Burgio, 1996; Zarit & Teri, 1992). Although the evidence from these studies is inconclusive regarding the superiority of any single model or intervention, the research literature does identify several promising approaches.

Among these approaches are strategies aimed at increasing caregivers' abilities to manage effectively the stresses associated with caregiving within a family context. Part of this management process is aimed at achieving balance, wherein balance is defined as the flexibility to adjust healthily to change. Presented in this article is a six-step Care-giving Consensus Management Model (Fetsch & Zimmerman, 1999; Zimmerman & Fetsch, 1994) that Cooperative Extension agents and other adult educators can teach individuals and families to reduce intergenerational stress and conflict.

Family conflicts are likely to emerge when a parent's aging requires collective filial action in response to increasing needs. One way Cooperative Extension professionals and other mental health professionals can assist intergenerational families is to teach them a six-step, process-oriented model for achieving family consensus regarding a shared vision or goal for the family's care taking of the elder person. The first two steps in the model are essential for establishing a family climate of trust, open communication, and a shared family vision of care giving for a three- to five-year time frame. The latter four steps facilitate more amicable interaction in the completion of priority care-giving tasks and responsibilities.

Below is a graphic to illustrate the six-step process model.

If any family member feels unsafe discussing their feelings and thoughts, efforts to achieve a shared family vision of care giving are likely to be sabotaged. Each family is unique, but five family rules that the authors have found help most family members feel safe during family discussions are:

1. I won't use what is said here against you later.
2. I will listen so well that I can repeat back to the speaker's satisfaction what they say and feel rather than lose my temper, yell, scream, or get violent.
3. I will give no blame, no shame, and no violence.
4. I will ask directly for what I want rather than force another person to accept my way.
5. When we get angry, I will call for a "time out" to cool down, relax, and set a time when we'll get back together to talk further.

Agreeing to abide by these rules creates a safe context for discussing sensitive family issues, for finding creative solutions to complex family problems, and for creating a shared family vision (Fetsch, 1990). It is recommended that the shared vision be written with as few words as possible so it can be remembered and referred to in future conversations. An example is: We want mom to live comfortably in her home as long as possible with daily visits from health care professionals and us.

Also recommended is that the family shift from an autocratic (one person decides) or a democratic (majority decides) to a "consensucratic" decision-making procedure. Consensus is defined as communicating, problem solving, and negotiating one major issue at a time until no family member has any major objections to the decision--all can live with it and none will sabotage the family decision (Zimmerman & Fetsch, 1994). This process involves all family members in compromising and in making sure that all viewpoints are heard.

Positive family meetings with all major stakeholders provide an opportunity for families to have structured times to deal with problems as they arise and to plan proactively for their elder family member's future health care. There are a number of recommended sources that provide guidelines for conducting effective family meetings, such as Dinkmeyer and McKay (1989). A recent compilation of different practical recommendations distills 10 simple steps that families have found useful (Fetsch, 1999; Fetsch & Jacobson, 1996):

1. Meet at a regularly scheduled time.
2. Rotate meeting responsibilities (secretary and chairperson).
3. Encourage all family members to participate.
4. Discuss one topic and solve one problem at a time.
5. Use I-messages and problem-solving steps.
6. Summarize the discussion to keep the family on track and to focus the discussion on one issue at a time.
7. Make decisions by consensus.
8. Once you think you have an agreement to a point that no one has any major objections to it, check it out to see if you have reached consensus and if no one will sabotage it.
9. If things get "too hot to handle," anyone can call for a break.
10. End with something that is fun and that affirms family members.

A common dilemma faced by many families is the lack of time, energy, and money to accomplish all care-giving tasks required by the loved one with dementia. One approach is to have families list all the tasks required to care for an elder family member. By generating a list of monthly tasks that need to be completed in the year ahead, along with an estimate of the number of hours necessary to complete each task, the family sets priorities. Key tasks may include bathing, personal grooming, house cleaning, preparing meals, perhaps feeding the person, selling a home, dealing with physicians and Social Security, updating wills and power of attorney, settling insurance claims, handling financial matters, listing all assets and liabilities, identifying what the person wants about funeral arrangements, and giving primary caretaker free time. Families who meet regularly can choose which tasks to take care of during the coming month.

Family members then group the tasks into "departments," and choose "department managers" who are responsible for seeing that the work within each group of tasks is completed. One sibling who lives nearby might arrange for housekeeping tasks to be taken care of, prepare some meals, and arrange for meals to be delivered. Another sibling can interface with physicians, nurses, hospitals, and insurance companies. A third sibling living more distant might assume the role of financial and legal advisor and interface with lawyers, bankers, Social Security, and so forth.

Tension and conflict frequently arise among family members. Such conflicts are normal and can be managed effectively by establishing a safe context for communicating and problem solving. Perceptions of who could or should do more can be openly discussed, and changes in care-giving responsibilities can be negotiated. Regular and open communication and problem solving help family members learn to appreciate and respect diverse approaches and opinions regarding the fulfillment of care-giving tasks. By establishing monthly calendars, which incorporate the groups of tasks, family members can be playful as they divide care-giving tasks to meet the needs of the elderly parent. This also helps reduce stresses and crises that inevitably arise when new, unexpected tasks emerge with which family members may be reluctant to help. This strategy helps family members build flexibility into their schedules and take time out to take care of themselves.

Success of the Care-giving Consensus Management Model can be sabotaged when resentments concerning the issues of fairness and equality rise. Among the primary problems of intergenerational care-giving families is the struggle regarding who makes decisions and how money and workload are fairly distributed. The authors recommend open communication and the creation of policies concerning equality and fairness. Examples include sharing the various physical, emotional, financial, and spiritual supports that different family members can provide, depending upon their individual strengths and situations and their geographic distance from the aging family member.

The first two authors used and tested an earlier version of this six-step Care-giving Consensus Management Model with an intergenerational ranch family. Both clinical observations and empirical data suggested that the process was effective when combined with family consultation (Fetsch & Zimmerman, 1999). Fetsch and Zimmerman (1999) found that the family increased their family satisfaction with adaptability levels. They also decreased their family strains, stress, and depression levels. The first author used parts of the model with his own family as they s .struggled to maintain family balance in the face of his mother's Alzheimer's Disease.

Caregiving and its social and personal consequences do not take place in a cultural vacuum. The willingness and ability of families to assume long-term responsibility for a loved one with dementia will be influenced by the traditions and values of the family, by the composition of the family, by the general economic conditions in the country, on the availability of and access to alternative measures of support, and so on.

One limitation of the model proposed in this article is that it assumes families have some level of effective and open communication. When a family has poor communication, a history of tension or dominance by either gender, or special needs in terms of low skills to work through the model, a family might obtain and use Cooperative Extension Fact Sheets with practical communication exercises (Fetsch & Jacobson, 1995; 1996). If the family still has trouble communicating, they may need to employ a family therapist to facilitate additional family sessions. Doing so can help resolve issues so the family can use the model more effectively.

A second limitation of the model is that it may not easily accommodate differences in the caregiving experience due to family composition or to differences derived from culture. Incorporation of cultural material into our model will be dependent on the findings of emerging research aimed at identifying cultural comparisons of the caregiving experience. These comparisons, it should emphasized, do not necessarily involve different racial or ethnic groups across societies, but can involve the comparison of different cultural groups within a society (such as Hispanic versus Non-Hispanic caregivers in the United States). Further program evaluation research is needed by Cooperative Extension faculty who test the effectiveness of the model using experimental and control groups of diverse families.

This article suggests that Cooperative Extension professionals, other adult educators, and clinicians can use the six-step Care-giving Consensus Management Model. As greater numbers of Americans join the elderly, the authors recommend that Cooperative Extension incorporate this model into their gerontology intergenerational programs. Its use can benefit needy elderly family members and their families by providing them with a structure for decision making, problem solving, priority setting, and task accomplishment. This is a practical way that Cooperative Extension professionals and mental health professionals can foster caregivers' health and balance.

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