The National Plan to Address Alzheimer's Disease (2014) calls for a coordinated effort to develop workforces in aging, public health, and intellectual and developmental disabilities that are dementia-capable and culturally-competent. In response to this directive, the U.S. Administration on Community Living presents the findings and resources in this white paper to community of providers who primarily serve older adults. It provides a broad overview of the services and support system for persons with intellectual and developmental disabilities (IDD) affected by dementia and their caregivers, examples of cross-network initiatives, and resources for improving dementia care across agencies and organizations that serve this population.
This white paper presents the current state of services and support system for persons with IDD who have dementia. There is recognition in the aging and IDD networks that states are in a transition period where the future of services will be more person-centered and focused on integration in the community (see Appendix A).
Research shows that age-related health problems among people with intellectual disabilities are similar to those in the general population, including the development of dementia in later life (Heller et al., 2010; May & Kennedy, 2010; McCallion et al., 2013). However, the prevalence of dementia in people with Down syndrome at middle and early elderly ages is higher than in the general population (Ball et al., 2008; McCarron et al., 2014).
Similar to the general population, early detection and diagnosis of dementia for persons with IDD is challenging and standardized tools used with the general population are not recommended for use with persons with IDD. Delay in diagnosis of AD in the IDD population often results in delayed treatment resulting in a reduced therapeutic window for effective use of medications. A variety of screening instruments, the need for comprehensive dementia evaluation and treatment options are described in this paper.
Existing IDD services, financing and the settings in which they are delivered, may differ from the services that older adults tend to access. However, similar to aging programs, many of the services available to individuals with IDD focus on maintaining or improving functioning, such as providing assistance with basic tasks of everyday life or with skills related to independent living in the community. Research points to Medicaid as key to financing the services and supports provided to individuals with IDD. Data analyzed on the services and financing of the IDD systems show that almost a quarter of the estimated 4.7 million people with IDD in the United States (24% or 1.1 million) receive long-term services and supports through publicly funded state IDD agencies. The primary home and community-based services that individuals with IDD access are: in-home support services that are non-medical, non-institutional residential care facilities, community habilitation or therapeutic services, and adult day services.
To date, efforts to develop a dementia-capable and culturally-competent system of care across agencies and organizations has included training staff in aging and dementia care issues for people with intellectual disabilities and ensuring that formal services and family care supports are prepared for dementia. Resources and program development considerations are presented in this paper to help build greater capacity to provide home and community-based services to an increasing number of persons with lifelong disabilities who are developing dementia, with a focus on collaboration to advance dementia-capability across aging and IDD systems. These considerations ensure that:
Dementia awareness education is available to persons with IDD, their caregivers and service providers;
Information and assistance services serving the aging and IDD networks identify those individuals with IDD and dementia and their caregivers who contact them (e.g Aging and Disability Resource Centers);
Persons with IDD and dementia are referred for appropriate diagnosis;
Program eligibility and resource allocations take into account the impact of cognitive disabilities on an aging population of persons with IDD; and
Dementia-capable home and community-based services available to the general population capable of serving persons with IDD and dementia.