programs for elders with dementia, including respite, psychoeducation, counseling, and emotional support, have resulted in increased caregiver satisfaction and in some studies, delayed institutionalization (Knight et al., 1993; McNally et al., 1999; Gitlin et al., 2003). On the other hand, two studies found that respite care for caregivers of patients with Alzheimer’s disease did not result in reduced stress and burden of lasting duration for caregivers (McNally et al., 1999; Lee and Cameron, 2006). The generalizability of these findings to interventions targeting cancer patients is unclear; a meta-analysis of a variety of caregiver support interventions found that caregivers of patients with dementia benefited less from such intervention than did others (Sorensen et al., 2002).
Overall, it appears that these types of educational, problem-solving, and supportive interventions can improve some aspects of caregiver satisfaction or self-reported sense of mastery, but few have shown actual improvements in problem-solving abilities, pain management, or other more objective measures of reduced caregiver burden. This body of work suffers from the failure to use standardized outcome measures, limited randomization of patients and caregivers to intervention groups, lack of longitudinal designs that would allow for measurement of longer-term effects, and analysis that fails to control for selective attrition. Nevertheless, the key role caregivers play in delivering essential social support and providing hands-on health care and logistical support to patients clearly points to the need for oncology providers to assess caregivers’ capabilities and stresses and work jointly with them and patients to identify and secure resources likely to be helpful in the caregiving role. As more research on support for caregivers is conducted, clinicians will have better insights into how best to provide such support.
Legal protections and services Help in obtaining protections and rights such as those afforded by the Americans with Disabilities Act, the Family and Medical Leave Act, and the Individuals with Disabilities Education Act can help prevent or ameliorate disruptions in family, school, and work life. Legal instruments such as power of attorney, legal guardianship for minors, mechanisms for disposition of assets, and legal representation in other matters are also important (Fleishman et al., 2006). Although legal service is another area in which there is scarce research on effectiveness, the New York Legal Assistance Group, a nonprofit organization offering free civil legal services to poor and near-poor individuals and families living in New York City, examined the impact of legal services on the lives of 51 of its clients with cancer.9 In response to a survey, these clients reported that
9As of 2005, the New York Legal Assistance Group had provided legal services to more than 500 individuals with cancer (Fleishman et al., 2006).