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30 Interventions in Alzheimer’s Disease KCE Reports 111 Conclusion There is evidence that several forms of psychosocial interventions and psychoeducation diminish caregiver burden and distress and increase their feelings of well-being. However, evidence is inconclusive as to the specific content of these interventions, and whether these interventions should be given individually or in group. 3.2.3.3 Respite care and special care units: effects on informal caregiver depression and stress Because of conflicting conclusions between systematic reviews, SBU concluded that was no evidence of benefit for caregivers from respite care (SBU review: based on Cochrane review; one additional systematic review showing conflicting results). 21 No significant differences in health and well-being were seen between family caregivers who placed elderly relatives in a nursing home and those who kept them at home or in the community (3 original studies). Neither did caregivers seem to benefit from placement in special care units. 21 Effects of special care units on outcomes in patients has been discussed in paragraph 3.2.2.1. 3.2.3.4 Interventions to delay institutionalization A recent meta-analysis was conducted by Spijker et al. 60 investigating the effectiveness of nonpharmaceutical interventions in delaying the institutionalization of patients with dementia. A total of thirteen support programs were selected, ten of which were studied using randomized trials. Most of the interventions were multicomponent and individualized and intensive, and includes dementia patients from the mild to the severe spectrum. The meta-analysis, according to a random-effects model, showed a lower odds of institutionalization in the intervention groups (OR 0.66; 95%CI: 0.43-0.99), as well as a significant increase in time to institutionalization (mean difference ~5 months). The most effective interventions were characterized by a multicomponent program, including supportive care-giving interventions, and individually tailored to the needs of the caregiver and care recipient. The authors concluded that the active involvement of caregivers in making choices about treatments, including counseling and personal assistance with problem solving, seemed to be the crucial intervention characteristic distinguishing effective and non-effective interventions. Being able to choose one of several interventions might lead to satisfactory involvement. The results of this metaanalysis were confirmed when the analysis was restricted to the studies with the best methodological quality. We briefly discuss the two larger RCTs included in the meta-analysis. In particular, the RCT by Mittelman et al. included in this meta-analysis deserves our attention. In two later publications by the same author, the initial sample was extended to 406 spouse caregivers of community dwelling patients in New York City with Alzheimer disease enrolled over a 9.5-year period, which is the largest follow-up period described so far. 61, 62 Enhanced counseling and support consisted of six sessions of individual and family counseling, support group participation, and continuous availability of ad-hoc telephone counseling. The study arm with these counseling and support interventions for spouse caregivers was associated with a delay in model-predicted median time to placement of 557 days. In addition, self-rated health in intervention group caregivers was significantly better than control group caregivers. Similar benefits of intervention were found for number of illnesses. Another very large study included in the review of Spijker et al. is the study of Miller et al. 63 describing usual care (N= 3944) in the USA Medicare system, and case management (N=4151) with a case load from 30 to 100 cases/manager, including a follow-up of 3 years. This study failed to show a shorter time to institutionalization for the intervention group (OR 1.05 (0.96-1.15). The difference with the previous study might be caused by the different concept of the intervention. The SBU review describes 13 studies (one also included by Livingston 5 ) analyzing the impact of the intervention on institutionalization. Three studies including caregiver support led to postponed institutionalization but studies were not comparable (two also included in Spijker et al.), and four studies (two also included in Spijker et al.) did not 21 .
KCE Reports 111 Interventions in Alzheimer’s Disease 31 The authors conclude that results are inconsistent and hence that no evidence exists. Two programs focused on day care, and one on respite care; four programs focused on case management, but one of these programs also included caregiver support. (One small case management study was also included in Spijker et al.) It was concluded that insufficient evidence was available for day care, respite care and case management concerning postponing of institutionalization. It can be concluded that promising evidence is available concerning the effect of caregiver counseling and support to postpone institutionalization by a period that is comparable to (or longer than) specific pharmacological interventions. However, these results need to be confirmed by further well-constructed studies. 3.2.3.5 Miscellaneous In a systematic review Smits et al., 64 describe 25 studies using combined programmes involving both care recipient and caregiver. The interventions concerning the care recipients were diverse: music groups, memory training, participation in a social club, art therapy, behavioral therapy, medication by geriatrician, etc. The interventions for the caregivers included mainly counseling, support (individual or group) and psychoeducation, but also case management, respite care, skills training, psychotherapy, art therapy, etc. Some of the included studies were also reported in the Livingston review 5 or the SBU review, 21 and 7 were included in the Thompson review on information and support to informal caregivers. Smits et al. concluded that interventions targeting both the patient and the caregiver are often effective in delaying admittance to long stay care, and have a positive effect on general health of the caregiver and the mental health of the person with dementia. No conclusion could be drawn for other mental health outcomes for caregivers, such as depressive symptoms, well-being, burden and competence. Effects on cognitive functioning and behavioural problems of the person with dementia were also inconclusive. The value of this review probably lies in the fact that positive effects on both caregiver and care recipient are underlined, whereas many other reviews study and emphasize outcomes in one of the two. The results on institutionalization confirm the results of Spijker et al. 60 3.2.4 General conclusion on non-pharmacological interventions in dementia Many methodological difficulties are encountered when evidence on nonpharmacological interventions are summarized. Inclusion criteria on dementia are often not well-defined, and even more common is the lack of information on the content of the intervention. Even when the intervention is well-described, it is often difficult to repeat it exactly, because of specific local circumstances and contextual influences which impact on the results. However, this might be inevitable in the kind of interventions that belong to this category. Further, many studies include only a limited number of participants. Last but not least, many different outcome measurements exist, and many of them are not fully validated. The study limitations illustrate the lack of organization and standardization in this field. This can be viewed as a direct result from the lack of intellectual property protection and company - regulatory authority interactions which have advanced the standards for the development of pharmaceuticals. This is however no excuse for our society not to implement high quality government-sponsored multicentre RCTs for nonpharmaceutical interventions that have shown promising results in preliminary studies. Some of the interventions discussed in this chapter are indeed supported by sufficient evidence justifying cost-effectiveness studies and eventually implementation in routine care. For some other interventions there are promising results that need further confirmation using randomized trials. Given the potential impact of this knowledge for the growing number of dementia patients, their caregivers and our society, support should be found to conduct such studies nothwithstanding the inheritant methodological difficulties.
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