Aging and IDD service networks enable people of all ages who have chronic conditions and disabilities to remain in their homes. With number of adults with IDD aged 60 years and older projected to nearly double between 2000 and 2030, people served through IDD networks will increasingly be at risk for developing dementia (Heller et al., 2010). Aging and disability service systems will need to build greater capacity to provide services to an increasing number of persons with lifelong disabilities who are aging, including older individuals with disabilities who will increasingly need more services and supports to maintain their health and independence. Cross-network collaboration may advance dementia-capability across these systems. Their populations face similar needs and, over time, both systems may serve the same people as persons with IDD and/or their caregivers become eligible for aging services.
This paper provides an overview of issues faced by persons with IDD affected by dementia and their caregivers, the resources available to them, examples of cross-network initiatives, and resources for improving dementia care across agencies and organizations that serve this population.
Future development of community-based services for adults with IDD affected by dementia through shared initiatives across agencies and organizations that involve the aging and IDD networks need to consider the following issues:
Is dementia awareness education available to the IDD population and service providers? This includes information about the risk factors associated with developing dementia, first signs of cognitive problems, management of symptoms if individuals have dementia, support programs, and opportunities to participate in IDD-focused dementia research.
Do the information and assistance services in both the aging and IDD networks identify those individuals with IDD and dementia and their caregivers who contact them? Strategies to ensure that persons are identified include adding dementia-specific questions to information gathering and assessment forms; training to recognize possible cognitive impairment in conversations with clients and their caregivers and in other interactions; and partnering with organizations specializing in dementia. Identifying individuals with possible dementia is only the beginning of the dementia care process.
Are persons with IDD and dementia being referred for appropriate diagnosis? Obtaining and documenting an individual's baseline level of performance over time in adulthood is optimal to accurately assess for dementia-related decline. Observer rated scales appear to be most useful for the screening of possible dementia in people with IDD. Once a possible dementia is detected, adherence to a formalized referral process for a comprehensive dementia evaluation by a trained specialist who understands assessment procedures for persons with IDD is ideal.
Are program eligibility and resource allocations taking into account the impact of cognitive disabilities on an aging population of persons with IDD? Dementia-capable home and community-based resources are needed by persons with IDD and their caregivers beginning when suspicions of a possible dementia arise to when care ends with eventual death. Individuals' needs change and become more intense over time. The number of older persons with IDD will increase significantly over the next 20 years as the prevalence rates of dementia in all populations increase with age. Assessing and addressing program eligibility and resource allocations may help better prepare for current and future needs of persons with IDD and dementia and their caregivers.
Are the dementia-capable home and community-based services available to the general population capable of serving persons with IDD and dementia? Although some people with IDD experience neurological symptoms, such as seizures, the majority of the dementia symptoms and the stage-based losses in capacity mirror those of the general population. The services and supports needed by the general population and dementia are the same as those needed by persons with IDD. Understanding the nature of the person with IDD's non-dementia-related lifelong disability is necessary to provide person-centered services and supports, but this process is the same as in the general population.
Resources are available to help systems address the needs of persons with IDD and dementia and their caregivers. As highlighted in this paper, The Administration on Community Living's National Alzheimer's and Dementia Resource Center, the National Task Group on Intellectual Disabilities and Dementia Practice, the Florida Department on Elderly Affairs and the Oneida County Office for the Aging/Continuing Care are just a few of the examples of sources for information on new and emerging practices in dementia-capable home and community-based services for persons with IDD and dementia.