To date, the handful of rigorous studies examining the impact of centre-based respite programs on the family caregivers of persons with dementia have reported mixed results. Lawton et al. (1989) offered diverse types of respite services to a randomly selected half of a group of caregivers of persons with dementia, and then examined both utilization rates and caregiver outcomes 12 months later. They found that, even after controlling for background factors, risk factors, such as the severity of the relatives' cognitive impairment, the quantity of respite used in the year prior to the study, and baseline levels of each indicator of the caregivers' wellbeing, respite had no ameliorative impact on the caregivers' mental health (e.g. depressive symptomatology), subjective burden or self-reported physical health. However, as previously noted, the experimental group that was offered various forms of respite actually made very little use of this service, with the day program being the least favoured form of respite. Specifically, only 23 participants used the day program, whereas 142 used in-home respite and 48 used nursing home (vacation) respite.
Zarit et al. (1998) recruited a sample of family caregivers to persons with dementia who made use of day programs at least two times per week for a period of three months (the short-term panel) and 12 months (the long-term panel). The control group consisted of caregivers who were matched in terms of several eligibility criteria (e.g. a relative with dementia, the caregiver was the person who spent the most time looking after the relative), and in terms of their willingness to use a day program, an important motivational control. They were recruited via printed materials distributed by Alzheimer Association chapters in regions where day programs were scarce but the population base was highly similar to the regions from which the experimental group was recruited. The latter group was recruited from 45 of 80 day programs in New Jersey that offer subsidies to low and moderate income families. For ethical reasons, only those families that agreed to participate in the research were included in the treatment condition.
The results showed that, at both three and 12 months, the respite users experienced significantly lower levels of worry/strain and overload, as well as depressive affect and anger than the control group. Interestingly, feelings of role captivity did not change nor did positive affect. It should also be noted that these findings apply only to those caregivers who continued to use respite services at least twice a week for three and 12 months, an intensity and duration of use that are not normative. As the authors observe: '... findings of benefits from day care must be tempered by the fact that many caregivers use it for only a brief period of time' (p. S277).
Gottlieb and Johnson (1995) recruited family caregivers of persons with dementia over a period of 18 months, enrolling them in the study at the time they first applied for respite from one of 16 day programs in the Canadian province of Ontario. Neither a control nor a comparison group was recruited because there were no caregivers waiting for respite, and because of the bias likely to be introduced by recruiting a sample of caregivers who chose not to utilize a service that was available to them. Using the Hopkins Symptom Checklist (Derogatis et al., 1974), baseline and five-month measures of anxiety, somatization and depressive symptomatology were administered, along with the Perceived Stress Scale (Cohen & Williamson, 1988) and a 14-item Life Satisfaction Scale (Andrews & Withey, 1976). For the sample of 58 (of 103) caregivers who continued to use the day program for an average of one-and-a-half days a week for five months, they found a significant reduction in anxiety, somatization and perceived stress, but not in depressive affect or life satisfaction.
In addition, to gain insight into the psychological mechanisms that contributed to these observed effects, Gottlieb and Johnson (1995) asked about 'the difference, if any, that the day program has made' in the caregivers' lives. Content analysis of the resulting qualitative data yielded three principal themes, the first related to the easing of the caregivers' posture of vigilance and apprehensiveness, illustrated by the following quotation: 'It's a great load off my shoulders. Peace of mind. Relieved. I feel better because he's doing so well. I am more relaxed when he is away. It's less stressful. I don't have to be on duty. I feel calmer and more peaceful.' The second theme conveyed a sense of freedom and liberation from the caregivers' role exigencies: 'You're free. You can go about your business. Strain is taken off you. It would be an awfully long week if I didn't have the two days. I don't know what I'd do without it. It's like being let out of a cage.' The third theme touched on the satisfaction gained from knowing that their relatives enjoyed the day program, which meant that the right decision had been made to enroll in the program. As one caregiver observed: 'She enjoys it as much as she enjoys anything in her life right now. It is one of the highlights of her life, and it is doing her good even though there is and will be no change in the disease. It helps her to be less worried and anxious about things. I like to think I'm doing a good thing.'
Finally, Kosloski and Montgomery (1993) examined the impacts on 47 family caregivers of either or both in-home and centre-based respite programs, recruiting a control group of 25 caregivers of persons with dementia who were waiting for these respite services. Recall that in this study respite use was also quite limited, averaging 220 hours over a period of six months, equivalent to two days of respite per week. However, since no minimum amount of respite use was required, the range varied between four and 1,137 hours over the six-month study period. Program effects showed small but statistically significant reductions in subjective but not objective burden, and a significant improvement in morale, measured via 32 items tapping various indicators of distress.
It is noteworthy that, when respite has been found to exert a statistically significant impact on the mental health and wellbeing of the caregivers, the effect is quite modest. Kosloski and Montgomery (1993) describe respite's impact on the caregivers' morale and subjective burden as 'relatively small but statistically significant', whereas Zarit et al. (1998) report significant reductions in depression in the order of only two-and-a-half points (from 18.3 to 15.8 in the short-term group, and from 16.4 to 14 in the long-term group). Even smaller mental health effects were found by Gottlieb and Johnson (1995), while null effects on depressive symptomatology were found by Cox (1997) and by Lawton et al. (1989). These modest effects are likely attributable to several factors, including the low 'dosage' of the intervention itself, which implies that, for all but a few hours per week, the caregivers continue to shoulder their care responsibilities, the fact that their relative continues to deteriorate, evidence that the caregivers spend their respite time engaged in various chores and personal and household maintenance activities (Berry et al., 1991), and possibly, the reduction or withdrawal of support from family members who decide that they are no longer needed.
General discussion and practice implications
Much of the available evidence regarding the timing and extent of utilization of centre-based respite programs can be concisely summarized by the phrase, 'Too little, too late'. This is because, when employed at all, respite is initiated quite late in the caregiver's career, and the pattern of use is neither intense nor extended in time. Specifically, when offered the service, between one-third and one-half of caregivers do not use it, and those who voluntarily enrol tend to do so at some point between two and four-and-a-half years after commencing the work of caregiving to a relative with dementia. Modal use is for five-six hours a day for approximately one-and-a-half days per week over a period of three-five months. In addition, given the late timing of program enrollment, attrition is high and occurs relatively soon after program commencement.
What this means for the de facto system of long-term care is that day programs fall somewhere between secondary and tertiary prevention. This is because, at the time of program enrollment, the caregivers display pronounced signs of distress and relatively low levels of life satisfaction, largely as a function of their onerous responsibilities and time investment on behalf of their relatives. If not in an outright crisis state, the caregivers have certainly experienced a great deal of wear and tear by the time they commence the program. Why service utilization is postponed so long is presently unknown, but it is probably a reflection of public policy messages that admonish the family to take full responsibility for the care of their own, buttressed by the opinions of other relatives who have a psychological if not a financial stake in keeping their relative in the community, and further reinforced by the self-reliant norms of the caregivers. This is not to say that more aggressive social marketing of respite services is not needed (Newton & Henry, 1992; Reifler et al., 1997); family physicians, local chapters of the Alzheimer Society and community information and referral centers could certainly recruit earlier and more proactively. However, to be more successful, outreach campaigns need to allay fears that program enrollment will result in the caregivers losing control over decision-making for their relative, that enrollment is the first step toward long-term placement and that it signifies a failure in coping on the caregiver's part. In addition, to counteract myths, threats and stereotypes, and to reassure the caregivers regarding their relatives' welfare at the program, detailed information, including the use of videos depicting a typical day, could be made available.
Given that caregivers view and employ respite as 'an end-of-the-road service to be used when they are on the verge of breaking down' (Brody et al., 1989, p. 69), day programs face a daunting challenge if their objective is to shore up the caregiving role. Yet data concerning the quantity and duration of day program use reveal modest ameliorative effects at best. In short, although day programs may play an important role in the community-based long-term care system, they are not a source of long-term care in themselves. In fact, the data concerning rates of institutionalization reveal that, for a substantial number of caregivers, centre-based respite programs serve as a conduit to permanent placement, not a strategy of diversion from placement. Moreover, this seems to be a deliberate goal for many caregivers who are already far along the placement planning process at the time they enroll their relative, and who state at the outset that their use of day programs is motivated by their wish to determine how they and their relative will react to part-time institutional care (Gottlieb & Johnson, 1995).
- Gottlieb, B. H.; Johnson, J.; Respite programs for caregivers of persons with dementia: a review with practice implications; Aging & Mental Health; May2000; Vol. 4 Issue 2
Reflection Exercise #7
The preceding section contained information
about the impact of respite care on caregivers. Write three case study examples
regarding how you might use the content of this section in your practice.
According to Gottlieb, what does research indicate about caregivers’ use of respite care?
Record the letter of the correct answer the