Professional Resources

The second edition of Mental Wellness in Adults with Down Syndrome builds on the authors' extensive expertise as founders of the first medical clinic dedicated to adults with Down syndrome. It serves as a vital resource for parents, caregivers, and health practitioners, focusing on the strengths and challenges that shape mental health in this population. The guide helps readers distinguish between true mental health concerns and typical traits or coping mechanisms of Down syndrome, such as using self-talk for problem-solving rather than as a sign of psychosis. This edition introduces new chapters on sensory issues, regression, communication, concrete thinking, and visual memory, alongside an updated chapter on Alzheimer's disease featuring the latest research. It also covers various conditions, assessment methods, and treatment options to enhance care for teens and adults with Down syndrome.

The article describes the effectiveness of a series of 10 ECHO sessions over 12 months which provided content on ID and AD/ADRD for 145 providers in over 20 agencies and discusses the series impact which was assessed by a follow-up survey sent to participants after each program. The study shows how Project ECHO can bridge gaps and span boundaries between the ID and aging care systems at multiple levels, improving interprofessional collaboration and care by addressing both knowledge and networking needs of providers.
Source: Phillip G. Clark, Edward F. Ansello, Faith Helm, and Ray Tanzer. Gerontology & Geriatrics Education, 2023. https://doi.org/10.1080/02701960.2023.2168269

Dr. Sunjay Gupta noted in his newsletter that the NTG's recommendations for assessing patients with intellectual disabilities are intended to help provide healthcare professionals the information they need for the "detection of any cognitive impairment". He also noted that this requirement appears in the Medicare Annual Wellness Visit component of the Affordable Care Act.

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.

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).

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).

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.

These guidelines, based on research, clinical experience, and best practices, outline recommended actions for addressing dementia in adults with intellectual disabilities (ID). Structured around the standard dementia staging model, they cover the progression from prediagnosis—recognizing early cognitive decline—through the early, mid, and late stages, highlighting expected behavioral and functional changes. The guidelines recommend using the NTG-Early Detection Screen for Dementia to identify early signs and emphasize nonpharmacological community care options. They also address critical issues such as abuse, financial management, decision-making, liability, medication, and nutrition. This version is adapted for publication in a journal.

Source: Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, F.T., and the National Task Group on Intellectual Disabilities and Dementia Practices. Journal of Policy and Practice in Intellectual Disabilities, 2013.

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 released this toolkit to combat the COVID-19 pandemic within nursing homes. It is designed to aid nursing homes in the US to receive 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.

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. 

A report via a conference poster from the Wisconsin Alzheimer's Institute where the NTG-EDSD was used to effectively train professional caregivers to screen and refer persons with dementia and intellectual disabilities.

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+

This guide and issued by the Administration on Community Living 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
Source: 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 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.

Chapter 11: NTG-EDSD, in Neuropsychological Assessments of Dementia in Down Syndrome and Intellectual Disabilities, Vee P. Prasher, Editor.

Overview guide to assessing adults with intellectual disability suspected of having symptoms of a later life cognitive impairment; designed an an information overview for general practitioners in Australia.

Special guidelines for adults with intellectual disabilities (ID) are essential as this population is living longer, with a growing risk of Alzheimer’s disease and related dementias. Many families, caregivers, and healthcare practitioners lack awareness of how age-related or pathological decline manifests in adults with ID, often misattributing changes to the underlying disability (diagnostic overshadowing), leading to misdiagnosis or missed diagnosis. Conventional diagnostic procedures are often unsuitable due to the varied functional and intellectual baselines of individuals with ID. Standardized guidelines for screening, diagnosis, and care would address these gaps, enabling timely and accurate identification of dementia and improved support. Such internationally unified guidelines, established by organizations like the WHO or Alzheimer’s Disease International, would bring significant medical and social benefits by improving care practices and outcomes for adults with ID and dementia.
Source: Matthew P. Janicki, Seth M. Keller. Alzheimer's & Dementia: Diagnosis, Assessment, and Disease Monitoring
Read article here: https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1016/j.dadm.2015.05.005

This white paper developed by RTI International (authors: Gorden, K. 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 that 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.

This is a comprehensive guide to various facets related to dementia in adults with intellectual disability, including assessment and diagnostics, care management, and other topics. See page 27 for commentary on the NTG-EDSD. (2015 updated version)

Source: British 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.