Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

Getting started in research: systematic reviews and meta-analyses.

OBJECTIVES: Systematic reviews are one of the major building blocks of evidence-based medicine. This overview is an introduction to conducting systematic reviews and meta-analyses. CONCLUSIONS: Systematic reviews and meta-analyses of randomised controlled trials (RCTs) represent the most robust form of design in the hierarchy of research evidence. In addition, primary data do not have to be collected by the researcher him/herself, and there is no need for approval from an ethics committee. Systematic reviews and meta-analyses are not as daunting as they may appear to be, provided the scope is sufficiently narrow and an appropriate supervisor available.

Public interest and private concern: the role of family carers for people suffering mental illness in the twenty first century.

OBJECTIVES: This paper looks to examine the emerging role of carers as essential components in the management of individuals affected by severe mental illness in the context of modern legal and health policy environments. CONCLUSIONS: Cultural and legal concepts of confidentiality within the doctor-patient relationship are complex. Increasingly, evidence is recognizing the essential role of carers in the quality management of individuals affected by severe mental illness and this emphasis is being further supported by innovative health policy and legislation. A public health definition for the role of carers may be a more appropriate way to consider their role in mental health management strategies.