Currently, approximately 4 million Americans suffer from Alzheimer's Disease (AD), and projections are that by the year 2050 this number will increase to about 14 million (Volicer, 2001
). In the United States, family members bear the primary responsibility for providing care for AD patients. Living with and caring for a family member with dementia is extremely challenging and time-consuming and may require the performance of tasks that are physically demanding or unpleasant. Family routines and dynamics are frequently disrupted, and many caregivers become isolated from family and friends. Furthermore, caregivers are continually confronted with the loss of a loved one and in many cases adaptation to new familial roles. As a consequence, many caregivers experience considerable burden and stress, resulting in compromised physical and mental health.
A large body of evidence suggests that caregivers are at risk for depression (e.g., Cohen & Eisdorfer, 1988
; Cohen et al., 1990
; Eisdorfer, 1991
). Prevalence rates of self-reported depression among community-dwelling caregivers of persons with dementia have ranged from 30% (Cohen & Eisdorfer, 1988
; Cohen et al., 1990
; Eisdorfer, 1991
; Kiecolt-Glaser, Dura, Speicher, Trask, & Glaser, 1991
) to as high as 83% (Drinka, Smith, & Drinka, 1987
). Studies that have included clinical diagnosis also report elevated levels of depression among dementia caregivers as compared with age-matched controls (Schulz, O'Brien, Bookwala, & Fleissner, 1995
; Vitaliano, Scanlan, Krenz, Schwartz, & Marcovina, 1996
). Caregivers also report an increased use of psychotropic medications such as antidepressants to manage their psychological distress (Schulz et al., 1995
The incidence of depression among caregivers appears to be related to the chronic stress of caring for an impaired relative (Dura, Stukenberg, & Kiecolt-Glaser, 1991
; Ory, Yee, Tennstedt, & Schulz, 2000
). Factors that contribute to depression include behavior problems among the care recipient, the caregiver's appraisal of their caregiving skills, isolation, family disharmony, lack of support, and disruption in other roles and activities. Female caregivers tend to be more depressed than male caregivers (Anthony Bergstone, Zarit, & Gatz, 1988
), and spouses are generally more depressed than other family members (Dura et al., 1991
). There also appear to be ethnic differences in depressive symptoms. African American and Hispanic American caregivers tend to report lower levels of distress, burden, and depression than White American caregivers (Connell & Gibson, 1997
; Gallagher-Thompson et al., 2000a
). However, the link between ethnicity and depression is not entirely clear, as there are some conflicting results in the literature. For example, John and McMillian (1998)
found that Mexican American caregivers experienced less emotional stress than White American caregivers, whereas Mintzer and colleagues (1992)
found no difference in level of depression between White American and Cuban American caregivers. These differences may reflect the diversity among the various Hispanic cultures. Amount of education and financial resources appear to be inversely related to depression, and caregivers in poor health and those who live with the patient tend to report higher levels of depression (Brody, Litvin, Hoffman, & Kleban, 1995
; Moritz, Kasl, & Ostfeld, 1992
; Rankin, Haut, & Keefover, 1992
Understanding depression among caregivers is important, as the onset of depression is not only harmful to the caregivers but also may affect their continued ability to provide care. Generally, the ability of caregivers to provide care for the patient at home is influenced by the interrelationship among four variables: caregiver–patient relationship, caregiver values, caregiver coping resources and strategies, and discontinuities in patient behavior (Czaja, Eisdorfer, & Schulz, 2000
; Miller & Eisdorfer, 1989
). An imbalance among these four variables, such as a reduction in the caregiver's coping resources as a result of depression, may increase the likelihood of patient institutionalization. Depression in the caregiver may also lead to depression in the AD patient, resulting in furthering the level of impaired functioning beyond that associated with the disease itself (Teri & Uomoto, 1991
Although the onset of depression is common among AD caregivers, to our knowledge there have been relatively few systematic studies of interventions directed specifically at reducing depression as the primary outcome. The results of these studies have been mixed. Buckwalter and colleagues (1999)
found that a community-based psychoeducational program aimed at teaching AD caregivers to manage behavior problems was effective in reducing caregiver depression. Gallagher-Thompson and colleagues (2000b)
reported moderate levels of success in reducing depression among caregivers who participated in psychoeducational programs as compared with wait-list controls. In contrast, Brodaty, Roberts, and Peters (1994)
did not find any differences between caregivers who attended a 4-month educational and skills acquisition training group and wait-list controls on measures of affect and family burden. Other investigators (e.g., Demers & Lavoie, 1996
; Gallagher-Thompson & Steffen, 1994
) have also found that psychoeducational interventions have not been effective in reducing depression among caregivers. Similarly, findings from the Medicare Alzheimer's Disease Demonstration project indicate that improved access to community-based care did not translate into significant reductions in caregiver depression (Newcomer, Yordi, DuNah, Fox, & Wilkinson, 1999
). A recent meta-analysis of 78 caregiver intervention studies (Sorensen, Pinquart, & Duberstein, 2002
) found that, taken together, caregiver interventions produced a significant improvement in depressive symptoms; however, the effects were smaller than for other outcomes such as caregiver ability and knowledge. The results also suggest that a combination of interventions that directly target the caregiver is effective in reducing depression. Schulz and colleagues (2002)
, in a recent review of the caregiver intervention literature, also found that the majority of studies that included a measure of depression as an outcome measure reported a small to moderate improvement in depressive symptoms. The effects were associated with a variety of intervention approaches.
One overarching problem with these intervention programs is that they may not target the range of the contextual elements that are critical to the caregiving situation. As discussed by Zarit and Leitsch (2001)
, the well-being and functioning of the caregiver and the person with dementia are shaped by their physical and social environment. Thus, in order for interventions to be effective in reducing caregiver burden and distress, they must be embedded within the larger social context of the caregiver. The social environment includes family members, friends, physicians, service providers, and the like. In fact, support from other family members and friends has been linked to caregiver burden and depression. However, despite the success of interventions that incorporate family members with other clinical populations (Bischoff, McKeel, Moon, & Sprenkle, 1996
; Campbell & Patterson, 1995
; Szapocznik, Scopetta, Ceballos, & Santisteban, 1994
), most interventions for caregivers of AD patients do not incorporate the wider social network of the caregiver. The results of those that have are promising.
Mittleman and colleagues (1995)
found that a comprehensive support program for spouse caregivers of AD patients that treated the caregivers and family members over the course of the disease was effective in reducing depression among the caregivers at 8-month and 12-month follow-ups. The data indicated that an increase in family cohesion and an increase in the caregiver's satisfaction with his or her social network were linked to depression at baseline and the follow-up assessments. However, the caregiver population was restricted to spouses, and the majority of caregivers were White Americans. As discussed, level of caregiver distress varies according to the caregiver's relationship to the patient and the caregiver's ethnicity.
This paper presents the results of a structural ecosystems therapy (SET), a family-based therapy intervention, and the SET intervention augmented by an innovative computer–telephone integrated system (SET + CTIS) in reducing depression among family caregivers of person's with AD. The specific intent is to examine the efficacy of the two interventions across Cuban American and White American caregivers and to examine the efficacy of the interventions over time. A further aim is to explore the differential effects of the treatment across varying caregiver–care recipient dyads. The interventions were evaluated at the Miami site of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) program.
Overview of the REACH Project
In response to the need for efficacious interventions for family caregivers of people with AD or a related dementia, the National Institute on Aging and the National Institute of Nursing Research recently sponsored a multisite research project known as REACH. In contrast to traditional multicenter clinical trials in which a single intervention is implemented at multiple sites, within the REACH project there were 15 well-defined interventions (9 active and 6 control group conditions) that were implemented at six sites (Birmingham, Boston, Memphis, Miami, Palo Alto, and Philadelphia) and assessed by use of common outcome measures. The interventions consisted of psychosocial–psychoeducational services, behavioral interventions, environmental modifications, and technology interventions. Three of the research sites included a minimal support telephone contact control group, and three sites included a usual care control condition.
The study population (N
= 1,222) included African American, Cuban American, Mexican American, and White American family caregivers of patients with AD and related disorders (ADRD). A common set of measures was collected at all sites at baseline, 6 months, 12 months, and 18 months following the population's random assignment to an intervention condition. The measures included indicators of caregiver mental health or well-being and depression; social support; caregiver burden; religiosity; service utilization; caregiver and care recipient physical health and medication usage; and care recipient behavior and cognition (see Wisniewski et al., 2002
, for detailed information regarding the REACH interventions, sample, design, and measures).
Overview of the Miami Interventions
The Miami site of the REACH program investigated the efficacy of SET and SET + CTIS in two different cultural groups of caregivers (Cuban American and White American). The interventions were compared to a telephone-administered minimal support control (MSC) condition.
Structural Ecosystems Therapy
SET, a structural family therapy intervention, was based on a Brief Strategic Family Therapy intervention developed by Szapocznik and Kurtines (1989)
for treatment of behavior problems in Hispanic families. The efficacy of Brief Strategic Family Therapy has been demonstrated in a wide range of clinical studies for the treatment of child and adolescent problems (e.g., Nelson, Mitrani, & Szapocznik, 2000
; Szapocznik, Santisteban, Hervis, Spencer, & Kurtines, 1982
). The goal of SET is to identify and restructure specific interactions within the family and between the family and other systems that may be linked to the caregiver's burden. The intent is to identify specific problems caregivers are experiencing, the range of usable resources available to the caregiver and their formal support systems, the range of community resources available and accessible to the family, and the capacity of the caregivers and their family to collaborate in the caregiving effort (Mitrani & Czaja, 2000
Structural Ecosystems Therapy + Computer–Telephone Integrated System
The CTIS is an information network that utilizes computer–telephone technology. The system was designed to augment the therapeutic intervention by facilitating linkages of the caregivers with both their family and with supportive resources outside of the home. In addition, the CTIS provided the therapist with enhanced access to both the caregivers and their family members. For example, the system allowed family members who are unable to attend sessions (e.g., those who are at distant locations, physically incapacitated, or too frail to leave their home) to participate in therapy.
Minimal Support Control
The MSC condition was designed to provide contact with the control group and form a face valid minimal intervention to prevent differential dropout between the more active intervention (SET and SET + CTIS) groups and this comparison group. This telephone-based, minimal support condition consisted of biweekly calls for the first 6 months and monthly calls during the next 7–12 months. The duration of the calls ranged from 5 min to 15 min and consisted of active listening and empathic comments when appropriate. In these comments, neither did the interventionist provide additional information on dementia nor did the comments consist of recommendations. Generic educational materials were also provided and included information on AD, local contact numbers, and caregiving.