Videos of Interest
Several of the NTG's principals were involved with the production educational videos (running about 20 minutes each) on aging and developmental disabilities and aging and dementia, as well as conference lectures, which have been posted on YouTube. They can be accessed via the links below:
Other Resources for Professionals
The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities
A team of specialists who work extensively with adults with intellectual disability promulgated these Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities as a framework for the practicing physician who assesses adults with intellectual disability.
Dementia in Mentally Disabled Hard to Identify
Sunjay Gupta noted the NTG's recommendations for assessing patients with intellectual disabilities which are intended to help provide healthcare professionals the information they need for the "detection of any cognitive impairment" -- a requirement that appears in the Medicare Annual Wellness Visit component of the Affordable Care Act.
Importance in Overall Health in Adults with Intellectual Disability and Dementia
Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the medical aspects of dementia in adults with intellectual disability, co-incident conditions, therapeutic pharmaceuticals, biomarkers, and general health and medical practices. This is Part 2 of a three-part presentation session (Given by Dr Seth M. Keller).
Intellectual Disability and Dementia Practice
Educational presentation given at the Winter Meeting of ACCSES held in Phoenix, AZ, on January 16, 2023. The presentation covers the US National Plan to Address Alzheimer's, some basics about dementia and particulars about dementia and intellectual disability, planning considerations for organizing dementia support service, and agency dementia services and administrative issues. This is Part 1 of a three-part presentation session (Given by Dr. Matthew P. Janicki).
Implications of dementia for adults with developmental disabilities.
Book chapter that provides an introduction to the topic of dementia in persons with developmental disabilities and covers the physiology of dementia, options for services, mechanisms for multidisciplinary management, and advances in advocacy, dementia prevention, and dementia research.
Bibliography on Dementia Care Management and Intellectual Disability
An extensive bibliography on a range of published studies, articles, videos, guides, etc., on care management and adults with intellectual disability associated with older age and dementia. Articles, media, books, book chapters and 'grey' materials are included along with abstracts and sourcing information.
CMS Best Practices Toolkit for Nursing Homes to Combat COVID-19
Recently, the CMS released a toolkit to combat the COVID-19 pandemic within nursing homes. The toolkit builds upon previous actions taken by CMS, which provide a wide range of tools and guidance to states, healthcare providers and others during the public health emergency. Additionally, CMS has contracted with 12 Quality Innovation Network-Quality Improvement Organizations (QIN-QIOs) to work with providers, community partners, beneficiaries, and caregivers on data-driven quality improvement initiatives designed to improve the quality of care for beneficiaries across the United States. The QIN-QIOs are reaching out to nursing homes across the country to provide virtual technical assistance for homes that have an opportunity for improvement based on an analysis of previous citations for infection control deficiencies using publicly available data found on Nursing Home Compare. This effort augments the CMS's five-part plan to ensure safety and quality in America’s nursing homes and recent agency efforts to combat the spread of COVID-19 within these facilities.
ISTAART Down Syndrome PIA Report on Research in 2020
Dr. Michael Rafii, the chair of the ISTAART Down Syndrome and Alzheimer's Disease PIA, and M. Florencia Iulita issued this useful 4-page report which highlights the progress that was made during 2020 as part of an extensive effort to look back at the landscape of the field of Down syndrome and dementia research, and recognize the efforts of various researchers look at hints of where the field is headed in the future.
National Core Indicators Data Base
NCI Data Brief Report on Characteristics and Outcomes of Older Adult with Intellectual and Developmental Disabilities (March 2020). Report also covers information on adults with ID and dementia. Report notes that of 24,453 adults, 1.1% are adults with dementia under age 55, 6.4% are 55-64, 8.5% are 65-74, and 19.0% are age 75+
Intellectual and Developmental Disabilities and Dementia: Practical Strategies for Professionals
McCallion, P., Knowles, M., & Gould, E. (2019). Intellectual and developmental disabilities and dementia: Practical strategies for professionals. National Alzheimer’s and Dementia Resource Center for the U.S. Administration on Aging. This guide provides background and practical strategies that can be used by professionals—from both the intellectual and developmental disability and aging communities—when working with individuals living with intellectual and developmental disabilities (IDD) and dementia. The guide is organized into 12 sections that address different aspects of identifying and providing services to individuals living with IDD and dementia or who are at risk of developing dementia. Included also are tools professionals can share with family caregivers or other caregivers who work with individuals living with IDD and dementia.
Link to web source page: https://www.rti.org/publication/intellectual-and-developmental-disabilities-and-dementia
Guidance on Use of Antipsychotics with Adults with ID and Dementia
This SAMSHA Guidance reviews non-pharmacologic behavioral approaches and strategies to avoid and reduce prescribing of antipsychotics whenever possible for older adults with dementia and people with intellectual and developmental disabilities.
Why Do We Need National Guidelines for Adults with Intellectual Disability and Dementia?
Alzheimer's & Dementia: Diagnosis, Assessment, and Disease Monitoring
Matthew P. Janicki, Seth M. Keller Why is there a need for special guidelines for adults with intellectual disability (ID)? Individuals with ID are living longer including those persons with Down syndrome, and the risk of manifesting Alzheimer’s disease and related dementias is increasing. Most families, community support organizations, and health care practitioners are not familiar with how age-related decline may typically manifest, including pathologic decline from underlying disease. A change or decline in function may be falsely blamed on the underlying ID (i.e., diagnostic overshadowing) and many adults with ID may go undiagnosed or misdiagnosed. These uncertainties and lack of awareness often can create a delay in recognition that dementia is present, and therefore, appropriate evaluation, treatment, and supports may not be provided. Furthermore, generally accepted measures and procedures for diagnosis often are not appropriate for adults with ID because of their variable functional and intellectual premorbid state. Guidelines offering standardized procedures for screening, assessment, and diagnosis would mitigate many problems associated with accurate ascertainment of the presence of dementia. Furthermore, guidelines for the care and support of adults with ID affected by dementia would go far to improve this growing personal, social, and health problem. Thus, we would argue that there is a medical and social benefit for a set of unified and comprehensive guidelines related to ID and dementia that transcend national interests and practices and provide consensus on internationally accepted practice - emanating from an international organization, such as the WHO or Alzheimer’s Disease International.
Read article here: https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1016/j.dadm.2015.05.005
IDD and Dementia
This white paper developed by RTI International (Gorden et al.) presents the state of services and support system for persons with intellectual disability who have dementia. It was designed to summarize the state of art in 2015 with a recognition states will have to provide services for aging adults who have dementia within person-centered and community integrative aspects for the purpose of participation in HCBS funding.
Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities Who Develop Dementia
The British Psychological Society (updated version)
See page 27 for commentary on the NTG-EDSD. Psychological Society. (2015). Dementia and People with Intellectual Disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia – Update. Leicester, United Kingdom: Author.
CARF International Standards Advisory Committee's Dementia Care Standards for Individuals with Intellectual or Developmental Disabilities
Dementia Care Themes 2013 CARF, at a meeting involving the NTG, identified a number of topics which are considered priorities for standards that can be implemented by community-based organizations providing services and supports to the persons with intellectual disability. This document provides the top themes that were identified along with specific points related to each theme.