Treating Alzheimer's Disease Through Caregiver Family Therapy
For individuals in the U.S. & U.S. territories
In Treating Alzheimer's Disease Through Caregiver Family Therapy, Dr. Sara Honn Qualls demonstrates her approach to helping families care for loved ones with Alzheimer's disease. Caregiver Family Therapy (CFT) assists families with recognizing, interpreting, and taking action to address symptoms of growing cognitive impairment while continuing to meet the needs of multiple family members.
In this session, Dr. Qualls works with a young African American woman named Michelle who is married with a family. Her mother, who lives with the client's disabled sister, is becoming less and less able to take care of herself. The night before the session, her mother called 911 to accuse Michelle's sister of abuse. This false accusation is seen as a harbinger of changes that will need to be made in Michelle's sister's living arrangement because of her mother's decline.
In the session, Michelle begins to realize that her caregiving is having a negative impact on her family and marriage. Dr. Qualls helps Michelle to explore restructuring the family and to develop a list of tasks that need to be accomplished to protect the well-being of her mother, sister, and herself and her family.
CFT helps families alter decision-making processes and relationship structures in later life to accommodate age-related declines in physical and cognitive capacities of a previously autonomous family member. As older adults experience cognitive declines, such as those produced by Alzheimer's disease, other family members must alter their previous roles to compensate for the lost capacities in a member.
Families must restructure themselves into new role configurations that engage them in different decision-making processes. Some families flounder in this restructuring process because they fail to make the scope of change needed, hesitate to initiate the change, overstructure the transition, or experience conflict among members' beliefs about the restructuring. CFT assists families with recognizing, interpreting, and taking action to address symptoms of cognitive impairment while continuing to meet the needs of multiple family members.
The primary goals of CFT are to
- empower families to make decisions that manage safety risks and support the highest potential level of autonomy of the impaired person
- assist caregivers in relating with other family members in ways that yield substantive as well as a subjective sense of support and healthy family functioning
- balance needs and growth of all family members according to the values of the family
- facilitate coordination of family members' efforts to provide care in ways that maximize quality of life for the older person, caregiver(s), and other family members
Stages and Components of Caregiver Family Therapy
Evaluation of the Person Who Is Impaired and Family System
Therapy begins with detailed interpretation of medical, neuropsychological, and functional assessment information to all family members engaged in decision-making roles (whether primary or secondary). Key safety risks, family decision-making processes and role structures, and caregiving burdens are identified.
Problem-Solving Immediate Risks and Identifying Formal Resources
Practical recommendations to modify care environments and services are offered to address immediate and long-term safety risks.
Family members are engaged in a reevaluation of their roles and decision-making structures to determine what functions need to be fulfilled by different members, and how the person with dementia can be engaged in the process. Often, persons with dementia deny the extent and impact of their impairments and attempt to maintain decision-making authority that places them at risk. Family members are coached in establishing new functional decision-making structures while engaging the person with dementia in interactions that respect capabilities.
The caregiver's capacity to sustain instrumental and emotional care services is assessed continuously, and he or she is coached in developing support relationships and providing services. As needed, caregivers are taught knowledge and skills useful to their role and self-care skills to maintain individual development in the midst of the demands of caregiving.
Balancing Members Needs
Other developmental tasks of the family are assessed, along with the family's capacity to support other members' development while providing care to the member with Alzheimer's disease.
Who Is the Ideal Client?
The focus of the therapy is on restructuring relationships to foster the enhanced well-being of the caregiver, care recipient, and the broader family system. The work often also includes restructuring the relationships with one's self and with formal care providers.
CFT is appropriate for aging families with caregiving responsibility for an adult. The therapy is designed for two family types:
- families caring for aging persons with late-onset cognitive impairment due to dementia (e.g., Alzheimer's disease), stroke, or other age-related brain dysfunction
- families in which aging parents have maintained primary responsibility for an adult child with an intellectual disability that limits self-care decision making
Aging families that are caring for a person with a physical disability but whose cognitive capacities are fully intact are not appropriate for this therapeutic approach.
Families access CFT at many points in their caregiving career.
Stages of the family caregiving career can be conceptualized as follows:
- Pre-Caregiving: Family members are uncertain about what is happening, but they are distressed at changes in the older family member. Typically, no name has been given to the problem yet, and indeed, the family may think it is depression or personality changes or reaction to a life event such as widowhood rather than a cognitive impairment.
- Transition to Caregiving: Family realizes there is a diagnosable cognitive impairment problem, and it may already have received a name. Family members are frustrated by the ill person's failure to recognize the scope or importance of the problem. They are also frustrated by the day-to-day deficits that are visible, because many appear similar to lifelong problems (e.g., depression, laziness or lack of initiative, irritability, blaming others for lost items, anger at not being trusted fully). Very little role restructuring has gone on.
- Early Caregiving Structure: The person with Alzheimer's disease has blatant deficits that hinder self-care abilities. The clearest deficits are in instrumental activities of daily living (e.g., driving, managing finances, managing doctor appointments), but very subtle decline is occurring in activities of daily living (ADLs; e.g., bathing, dressing), although the ill person typically functions independently. The ill person may have a broad range of responses to deficits—denial, grateful dependence, or combative power battles. The family may step in to compensate for deficits effectively or may be under- or overly involved. Multiple family members may have different opinions about care needs, safety concerns, or preferred care strategies (e.g., relocation or in-home support), so conflict may emerge. Family members often begin to rely significantly on external service providers.
- Middle Caregiving Structure: The person with Alzheimer's disease clearly needs assistance with many ADLs and can no longer live independently. Family members must make decisions for the person with the disease, although the legal authority for doing so varies from none to formal guardianship. The care recipient may or may not like his or her loss of decision-making authority, but the family recognizes the need to act despite the care recipient's preferences. However, the family's recognition varies according to the task, the day, and the person. In other words, some families may take longer than others to exert their decision-making authority in some tasks (e.g., family will allow the ill person to remain in the home when it is no longer safe but will step in to manage medication administration). They may be more decisive on some days than others. The degree to which each family member will intrude on the ill person's autonomy will most likely differ from person to person.
- Late Caregiving Structure: Significant involvement of external providers is typical. Institutionalization may occur, or significant in-home care or day care may be provided. The ill person requires complete structure for his or her days, activities, and self-care. Family members need to make decisions about end-of-life care (e.g., will they decide to fully treat all illnesses; will they decide to use a feeding tube when the ill person forgets how to eat). Family members are beginning to anticipate the death and post-death lifestyle for all members involved in caregiving.
- Post-Caregiving Structure: Family members have witnessed the death of the person with Alzheimer's disease and are handling the follow-up to close the estate and care arrangements. They must deal with belongings, financial and property assets, wills, and personal effects. They must create a life structure that no longer includes the demands of caregiving. Roles with other family members that primarily revolved around shared caregiving responsibilities must be renegotiated and refocused.
These stages are not meant to be tightly linked to the tasks listed under them because of the myriad of variables that can influence how a family progresses through the Alzheimer's disease experience. Variables that can influence the progression through stages include sudden changes in the family structure due to the entry and exit of members (e.g., through divorce, remarriage, death), as well as significant changes in social policy (e.g., Medicare policy, budget cuts in Medicaid) and resources (e.g., loss of income, unexpected inheritance).
Families that shift the primary caregiving role among various members also inevitably shift the overall family decision-making structure, and that shift can require them to re-engage in tasks typically associated with an earlier period of caregiving. For example, late-stage caregiving families typically have been in a stable role structure for many months or years, but the death of a spouse caregiver can require all members to renegotiate a new role structure to compensate for lost functions of the deceased spouse.
Sara Honn Qualls, PhD, is professor and director of clinical training in the psychology department at the University of Colorado (CU) at Colorado Springs, where she also serves as director of the Gerontology Center. She is a practicing clinical psychologist who helped establish the CU Aging Center, a community-based geriatric mental health clinic, and the new clinical geropsychology doctoral program that opened in fall 2004.
She has published two books, Psychology and the Aging Revolution (American Psychological Association, 2000) and Aging and Mental Health (1998). Her research and writing focus on marital and family development in later life and clinical interventions for later life couples and families.
She directs the Caregiving Family Therapy team for the CU Aging Center and is chair of the Aging Initiative for the CU-Colorado Springs, a plan to enhance the capacity of the university to improve the experience of aging for all of us.
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