Resources

This recently updated second edition of Mental Wellness in Adults with Down Syndrome reflects both the breadth of the authors' knowledge - acquired as co-founders of the first medical clinic dedicated solely to the care of adults with Down syndrome - and the number of psychosocial issues and mental disorders that can affect people with Down syndrome. It is a 'go-to' guide for parents, health practitioners, and caregivers who support teens and adults with Down syndrome. Its focus is on mental wellness and the understanding and appreciation that both the strengths and challenges of people with Down syndrome are the key to promoting good mental health. Readers will learn to distinguish between bona fide mental health issues and common characteristics of Down syndrome and whether these are quirks or coping strategies. For example, although talking to oneself can be a sign of psychosis, many adults with Down syndrome use self-talk as an effective problem-solving strategy. The second edition includes new chapters on sensory issues and regression, chapters on communication, concrete thinking, and visual memory, and an extensively updated chapter on Alzheimer's disease citing new research. Other chapters cover a range of conditions and assessment and treatment options.
Source: Dennis McGuire, PhD & Brian Chicoine, MD, (2021), Woodbine House Publishing (with 2nd Ed. rights for self-publish reverted to the authors), 588pp.

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, drawn from research and clinical experiences and demonstrated best practices, note what actions should be undertaken related to dementia in adults with intellectual disability. Framed by the staging model generally accepted for practice among generic dementia services, these guidelines flow from a prediagnosis stage when early recognition of symptoms associated with cognitive decline are recognized through to early, mid, and late stages of dementia, and characterizes the expected changes in behavior and function. The guidelines cite the application of the NTG-Early Detection Screen for Dementia as a first step in documenting early signs of cognitive and functional changes among people with intellectual disability and provide information on nonpharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication, and nutritional issues. These guidelines are the journal version.

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.

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.
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.