July 2015 IDD and Dementia Report Prepared for Erin Long, MSW Administration on Aging Administration for Community Living 1 Massachusetts Avenue, NW Washington, DC20005 Prepared by Kate Gordon, MSW Molly McGinn-Shapiro, MPP Elizabeth Gould, MSW Sari B. Shuman, MPH, MSW Joshua M. Wiener, PhD RTI International 701 13th Street, NW, Suite 750 Washington, DC 20005 RTI Project Number 0212050.035 IDD AND DEMENTIA RTI International Administration for Community Living Contract No. HHSP23320095651WC July 2015 _________________________________ RTI International is a registered trademark and a trade name of Research Triangle Institute. DISCLAIMER AND ACKNOWLEDGMENTS This project was funded by the Administration for Community Living under contract no. HHSP23320095651WC. The statements contained in this report are solely those of the authors and do not necessarily reflect the views or policies of the Administration for Community Living. RTI assumes responsibility for the accuracy and completeness of the information contained in this report. The authors would like to thank Dr. Kathleen Bishop, Ms. Teresa Galbier, Dr. Matthew Janicki, Dr. Ronald Lucchino, Dr. Philip McCallion, Mr. Michael Romano, and Ms. Kathryn Pears for their contributions to this paper. _________________________________ RTI International is a registered trademark and a trade name of Research Triangle Institute. CONTENTS 1 Executive summary .......................................................................................................................1 2 Introduction ...................................................................................................................................3 3 Issue Background ..........................................................................................................................6 4 Screening, Diagnosis, And Treatment ..........................................................................................8 4.1 Screening........................................................................................................................8 4.2 Diagnosis........................................................................................................................9 4.3 Treatment .....................................................................................................................10 5 Services And Financing System ................................................................................................12 5.1 Long-term Services and Supports Financing System for Individuals with Intellectual or Developmental Disabilities...................................................................12 5.2 Home and Community-Based Services .......................................................................15 5.3 Institutional-Based Services.........................................................................................18 5.4 Services for Caregivers of Persons with IDD and Dementia .......................................18 5.5 Services Available for Persons with IDD and Dementia .............................................19 6 Initiatives to Improve Community-based Services for people with IDD and Dementia ...........22 6.1 Training ........................................................................................................................22 6.2 IDD and Aging Systems Integration with a Dementia Focus ......................................23 7 Conclusions .................................................................................................................................28 8 Appendix A .................................................................................................................................31 9 References ...................................................................................................................................33 List of Tables 1 LTSS for Individuals with IDD—In-Home Support Services (Nonmedical) ..................... 13 iv SECTION 1 EXECUTIVE SUMMARY 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 1 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. 2 SECTION 2 INTRODUCTION Although it is well known that older people are at higher risk for Alzheimer’s disease and dementia, it is less well known that individuals with intellectual disabilities, especially Down syndrome, are also at high risk of the disease. The need for enhanced community-based support for persons with intellectual disabilities and dementia and their caregivers will expand as the overall population ages. With the aging of the population, the number of older people will increase significantly over the next 20 years, a trend that will be mirrored among older adults with an intellectual disability (National Task Group on Intellectual Disabilities and Dementia Practice [NTG], 2012). 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). 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). Chromosome 21 plays a key role in the relationship