A number of studies have described the problems of caregivers of persons with dementia. Among these problems are loss of support from a life partner, social isolation, and difficulties in making complicated financial, legal and social decisions. The burden of care is considerable in economic, emotional and physical terms, and translates in many cases as increased physical and psychological morbidity.1
In the interesting study by Alonso Babarro et al, no significant reductions were found in the burden of care in caregivers who participated in the ALOIS program. These results are consistent with the findings of two recent systematic reviews that found no conclusive evidence to support the use of interventions based on technologies such as the telephone or personal computer, caretaker education or training, or highly specialized multidimensional strategies for training caregivers.2,3
Should these results be interpreted to mean that the interventions we might use for caregivers of patients with dementia have no effect? Although the reviews suggest this interpretation, the questionable methodological quality of the clinical trials carried out to date makes it impossible to state categorically that support interventions for caregivers of patients with Alzheimer's disease and other dementias are not effective. Most studies included small numbers of patients, did not ensure that the groups were comparable for all co-interventions, and recorded different outcome variables. On the other hand, some well-designed studies4-6 obtained favorable results for caregivers.
Studies now under way or whose results are now being analyzed may be of great help in clarifying the effectiveness of interventions aimed at caregivers of patients with dementia. Notable among these studies is the REACH project (Resources for Enhancing Alzheimer´s Caregiver Health), a multicenter trial that will evaluate different psychosocial interventions and their impact on health and well-being in 1222 caregivers residing in six cities in the USA.7
Patients with Alzheimer´s disease have a mean live expectancy of 7 to 10 years from the time of diagnosis. Given that the care needs change in persons with a disease of this nature, future research should attempt to evaluate the impact of the disease on the caregiver in the long term, even after the patient has died. In this connection one recent article observed that more than 40% of the caregivers had clinical symptoms of depression during the final months of the patient´s life, and 30% had questionnaire scores that were suggestive of risk of depression one year after the patient had died.8 These figures are higher than those found for caregivers of patients with other terminal illnesses. A multitude of factors may account for this, but the main factors are that the caregivers face a long-term illness, and that the illness is associated with behavioral disorders which, in the final stages of the disease, create a high degree of dependence in the patient.
Future clinical trials should examine interventions that have been evaluated and published previously, and should incorporate outcome variables that are common to other studies and which are easy to interpret by all interested parties, especially caregivers themselves.9 Caregivers occupy a very important place in a community´s health and social policies,10 and future research should concentrate on identifying those interventions able to prevent or minimize deterioration in mental health and loss of quality of life in caregivers.
Key Points
* Systematic reviews of clinical trials that evaluated support interventions for caregivers of patients with dementia have provided no conclusive results that support the effectiveness of these interventions.
* The results of many of these clinical trials should be interpreted with caution given their poor methodological quality.
* Studies with longer follow-up periods and that include greater numbers of patient-caregiver pairs would make it possible to determine whether interventions aimed at supporting caregivers are effective.
