The prevalence of dementia increases dramatically after age 65 to approximately 42% of the population aged 85 or older (Alzheimer's Association, 2007
). Based on the U.S. census, 5.1 million Americans have dementia in 2007, with predicted increases to 13.2 million by 2050 (Hebert et al., 2003
). Estimates suggest that from 65 to 75% of dementia patients are cared for at home by family members, including both spouses and adult children (Aneshensel, 1995
). There are approximately 10.4 million dementia caregivers in the U.S., providing an average of 16.6 hours of care each week (NAC/AARP, 2003). Given that dementia is a widespread problem and that the majority of dementia caregivers provide informal home care, cost-effective and accessible psychosocial interventions are necessary.
Dementia caregiving is associated with a variety of negative health consequences. Dementia caregivers consistently report higher levels of depression and anxiety and exhibit high rates of mood disorders (Schulz & Matire, 2004
). There is also evidence that providing caring for an individual with dementia can lead to increased risk for physical health problems and death (Hooker et al., 2002
; Vitaliano et al., 2003
). Although caregiver demographic characteristics (e.g., age, gender, race), severity of dementia, and behavior problems contribute to emotional burden and distress (Davis, & Tremont, 2006; Hooker et al, 2002
; Torti et al., 2004
), caregiver appraisal of problems, depression and guilt, social support, quality of life, coping skills, and feelings of self-efficacy are important predictors of caregiver burden (Connell, Janevic, & Gallant., 2001; Gilliam & Steffen, 2006
; Markowitz et al., 2003
). Recent evidence also shows that satisfying pre-illness relationships between caregivers and persons with dementia and good family functioning are associated with lower reactivity to memory and behavior problems and less burden compared to individuals with unsatisfying prior relationships and poor family functioning (Steadman, Tremont, & Davis, 2007
; Tremont, Davis, & Bishop, 2006
). Despite the negative consequences for most dementia caregivers, some individuals experience postive effects of providing care (Cohen et al., 2002). In addition, length of caregiving may result in stability or decreases in burden and may increase time to nursing home placement, suggesting adaptation to the caregiving role (Gaugler et al., 2005
; Towsend et al., 1989). Overall, factors accounting for emotional distress in dementia caregivers seem to be partially explained by objective caregiver and patient characteristics, although there is evidence that modifiable subjective factors play a major role. Given these findings, psychosocial interventions focused on changing perceptions, improving coping skills, and encouraging resource use are particularly important.
Meta-analyses of psychosocial interventions for dementia caregivers demonstrate small to moderate statistically significant effects on a broad range of mental and physical health outcomes, with particularly strong effects on service utilization, delayed institutionalization, and psychiatric symptomatology (Brodaty, Green, & Kochera, 2003; Knight, Lutzky, & Macosky-Urban, 1993; Schulz et al., 2002; Sorensen, Pinquart, & Duberstein, 2002
). Comprehensive caregiver interventions involving regular, individualized contact with a counselor/social worker delivered over an extended period have resulted in reduced caregiver distress compared to control conditions (Brodaty & Gresham, 1989
; Mittelman et al., 1993
). Well-controlled, large-scaled psychosocial interventions consistently show caregiver satisfaction and subjective benefit from the intervention, improved knowledge about dementia caregiving and the disease course, reduced depression, anxiety, anger, and hostility, and delayed institutionalization. However, reduction in perceived burden has been less consistently identified (Acton & Kang, 2001
). It appears that multi-component interventions may result in the best outcomes for perceived caregiver burden and distress. Additionally, individually-tailored interventions and interventions of longer duration (6 months or more) appear more efficacious than fixed, briefer interventions (Belle et al., 2006
; Brodaty et al., 2003
; Gitlin et al., 2003
; Schulz et al., 2002; Sorensen et al., 2002
;). Therefore, there is good evidence that psychosocial interventions can improve dementia caregiver well-being. The next step in developing interventions for dementia caregivers is to improve cost-effectiveness, ease of implementation, and accessibility.
Telephone interventions are generally highly acceptable to patients and have effects on a broad range of mental and physical health outcomes and medical resource utilization. For example, telephone interventions have been successful in all of the following areas: (1) reducing mortality, hospitalizations, and office visits in the primary care setting (Wasson et al., 1992
); (2) improving compliance with medical procedures (Cargill, 1992
); (3) increasing knowledge about medical problems (McCullough, Day, Herlihy, & Rapp, 1989
); (4) minimizing stress and anxiety and depressive symptoms in medical patients (Evans & Jaureguy, 1982
); and (5) bringing about health-related lifestyle changes including smoking cessation (Ockene, 1991
). A frequent concern raised in the literature is whether telephone-based interventions work because of nonspecific factors such as increased attention from telephone contacts or are a direct result of the specific therapeutic techniques. Austin et al. (1996)
examined this question by assigning patients with systemic lupus erythematosis to either telephone counseling or telephone symptoms monitoring. Counseling was shown to be superior to symptoms monitoring in improving functional status, arguing against the nonspecific effects hypothesis. There are few studies of telephone-based interventions for dementia caregivers. An uncontrolled telephone counseling program for dementia caregivers showed improvement in stress, burden, and anxiety, though was methodologically limited (Strawn & Hester, 1998
). Telephone voice mail and computerized interventions for caregivers have had mixed results, with some positive findings in subsets of caregivers (Mahoney, Tarlow, & Jones, 2003
), possibly related to the amount of time caregivers spend accessing these interventions.
Because of concerns about cost and accessibility to dementia caregivers, we developed an intervention, Family Intervention: Telephone Tracking – Dementia (FITT-D). The intervention is a modified version of a program designed to help caregivers of stroke victims that has demonstrated preliminary efficacy (Miller et al., 1998
). It is delivered entirely over the telephone. Theoretical underpinnings of the intervention are based on psychosocial transition (Tyhurst, 1958), transactional stress and coping (Lazarus & Folkman, 1984
), and a systems view of family functioning (i.e., McMaster Model of Family Functioning; Epstein et al., 1978
). Taken together, the three underlying theories of the FITT-D are geared toward enhancing coping within the caregiver through active problem-solving and facilitating positive changes within the family system. According to these models, dementia caregiving is comprised of potentially stress-inducing transitions that prompt an appraisal process by the caregiver to identify whether resources (particularly those within a family) can be mobilized to cope with the changes. Within these overlapping models, caregiver burden is viewed as a situation in which demands (both perceived and objective) exceed the coping and resources (both perceived and objective). As burden persists, it becomes a stressor in its own right, leading to feelings of helplessness, hopelessness, and depression. Overall, the FITT-D directly targets caregiver appraisal and coping processes to directly reduce stress, improve caregiver mood and quality of life, and positively impact the family system.
The current study reports preliminary findings of the FITT-D. It was hypothesized that caregivers receiving the FITT-D would show reductions in burden, depression, and reactions to memory and behavior problems compared to caregivers receiving standard care.