By Karen L
. Rice, M.A., LNHAGerontologist, Negotiator, Mediator
Caregiving is a rapidly increasing role for families, but it has been a popular topic of research for years. A critical role found in families does pertain to care and nurturance.
The primary caregiver role generally falls first on the spouse, then an adult child, usually the daughter. Love, devotion and loyalty are frequent reasons given by primary caregivers for taking on the responsibility of care. Yet, studies have shown that a greater amount of strain results when the caregiver-recipient bond is strong indicating need for research on family discourse.
Common themes found in the caregiving literature are stress, burden, and most recently, conflict. Family relationships can provoke conflict; even more so in caregiving because family structures are so radically altered by the caregiver role. In the case of caring for Alzheimer's patients, it's the demand involved in round-the-clock caregiving which challenges the system and the response. Ultimately, the family's functioning; its physical, emotional, social, and monetary resources are challenged by care giving.
As noted in literature on caregiver mediation written by The Center for Social Gerontology in Ann Arbor, Michigan, "demographics illustrate the need for effective solutions for addressing and resolving problems that arise in caregiver situations. According to a recent report by the National Alliance for Caregiving and AARP, nearly one in four families in the U.S. are involved in caring for a friend or relative age 50 or older. Of these 22.4 million families, 41% are also caring for children under 18; almost one-third of the families provide care to two or more relatives or friends, and 64% of the caregivers are employed and trying to balance caregiving with work.
Pressures faced by caregivers easily erupt into disputes with the elder who requires the care or with other family members whom the caregiver may feel are not carrying their fair share of duties or who may disagree with the things the caregiver is doing, including how the elders' money is being managed or spent. TCSG states, "in our extensive work on these issues, we have seen repeatedly that the pressures and demands of long term caregiving can, and all too frequently does result in two reactions.
First, family disputes and conflicts get worse over time with the frail elder person who needs long term care being placed in the middle of the dispute. Second, petitions are filed, often inappropriately, to place the elder under guardianship, usually in the false hope that such court- ordered intervention will enable decisions to be made which will solve what are, in reality, family caregiver disputes; and with guardianship often being used to place the elder in a long term care facility, with the resultant loss of home, autonomy and dignity.
There is little doubt that caregiving is associated with increased family conflict and with heightened concerns and anxieties about neglecting other family members. In a report by Toseland others , "the "paucity" of family interventions to address these conflicts and anxieties is noted. Toseland et al go on to say that when family members are willing to participate, family counseling can be effective in addressing these issues." TCSG's literature notes that a largely unexplored alternative to counseling or therapy is mediation.
The Center for Social Gerontology was awarded a federal grant from the Administration on Aging (AoA) and a state grant from the Michigan Department of Community Health (MDCH) for a local and national multi-state family caregiver mediation demonstration project which was implemented last year. Susan Butterwick serves as Directing Attorney for the Caregiver Mediation Project. She states that mediation is not therapy or counseling. It is a one-time intervention to help resolve conflict and facilitate important decision-making in families about the care of an elder person, and it may be the most effective way of solving the dispute that is causing so much concern to the family members at the moment.
Mediation provides a unique tool in such cases for elders, families and caregivers to move beyond impasse into positive decision-making that meets the needs of all parties, while, in many cases, avoiding costly and unnecessary long term care services. Family caregiving mediation, like general mediation, provides a cooperative, non- adversarial setting for families to discuss their concerns in privacy and with confidentiality. The mediator serves as a neutral facilitator who has no connection to the case or situation The mediator does not decide the outcome or determine who is right or wrong; and there is no force on the disputing parties to reach agreement – it is a consensual process in which all parties must agree in order to have an agreement. The mediator listens to the concerns of all the parties and their ideas on how the matter might be resolved, facilitates the conversation, and helps the parties develop and agree upon a workable solution themselves.
Under TCSG's demonstration project, the mediators have undergone additional specialized training in elderly, family, caregiver, and guardianship issues. Butterwick strongly recommends that mediators who work with this population take additional training in order to better understand the issues a mediator encounters when working with families, caregivers and frail elderly persons. Butterwick says the TCSG three-year demonstration project is now in its second year. To date, several families have been assisted in resolving difficult disputes and have reached decisions in mediation concerning family visitation, living arrangements, home repairs, financial arrangements, caregiver respite, and medical decision-making, care, and guardianship issues.
Author Karen Rice is a gerontologist, mediator and licensed nursing home administrator in private practice in dementia care services: alzheimerfamilycaremanagement.com
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