Approach to providing care for aging adults with intellectual and developmental disabilities

Objective To provide an approach to caring for aging adults with intellectual and developmental disabilities (IDD) in the context of the onset of new or worsening chronic illnesses and the need for planning for the end of life. Sources of information A MEDLINE search identified few review articles in the past 10 years. This review builds on relevant articles and the experiences of the author and colleagues working with aging adults with IDD and their families, physicians, and other caregivers. Main message To provide care to this patient group, physicians must understand the diverse cognitive abilities of adults with IDD; the risk factors for physical and mental illnesses; concerns related to diagnostic overshadowing; and the need for coordinating individual care plans for those with serious and terminal illnesses. Conclusion Primary care physicians can provide and coordinate appropriate care for patients with IDD as they face the health challenges associated with aging and dying. Being aware of patients' baseline cognitive abilities and decision-making skills, as well as changes in cognitive abilities associated with aging and complexity of illness, will help determine patients' capacity to consent, identify appropriate treatment choices, and guide coordination of care. Further research and consensus statements are needed to guide best practices based on the Canadian experience and to allow continuing development of caring, professional, and competent providers to support aging adults with all levels of IDD.