Resources for Professionals

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. 

                                                                                                                                                                                                 Click on image

COVID-19 Toolkit CMS.png
Bibliography on Dementia Care Management and Intellectual Disability

An extensive annotated reference bibliography covering research and practice journal articles, books, videos, and other media, as well as tool kits related to care management and dementia and intellectual disability. Items are listed in alphabetical order by first author's last name. 

To search on topics or key words use the FIND function in your Adobe Reader. The bibliography is updated periodically. Included are peer-reviewed articles, book chapters, videos and toolkits, and grey publications. To submit additions contact author

For bibliography click on image.                                                                                                               current version 22

National Core Indicators Data Base

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+ 

                                                                                                                                                                                        Click on image

SAMHSA Guidance on Use of Antipsychotics with Adults with ID and Dementia

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+ 

                                                                                                                                                                                         Click on image

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. 

What is Dementia

An illustrated booklet, produced by Down Syndrome Scotland, to explain what is dementia to persons with an intellectual disability

Click on image

Page%201%20image%20-2020%20report_edited
What%20is%20Dementia-cover_edited.jpg
Living with Dementia

An illustrated booklet, produced by Down Syndrome Scotland, which explains what it means when a family member has dementia; designed for caregivers of persons with an intellectual disability.

Click on image

Edinburgh Principles

A historical article that covers the Edinburgh Principles -- seven statements identifying a foundation for the design and support of services to people with intellectual disability affected by dementia, and their carers. The accompanying guidelines and recommendations document provide an elaboration of the key points associated with the Principles and is structured toward a four-point approach: (a) adopting a workable philosophy of care; (b) adapting practices at the point of service delivery; (c) working out the coordination of diverse systems; and (d) promoting relevant research.

Click on image

Click on image

CARF International Standards Advisory Committee's Dementia Care Standards for Individuals with Intellectual or Developmental Disabilities

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.

Click on image

Keep Talking About Dementia (Down Syndrome Scotland)

Brief booklet designed for siblings and professionals with some basic checklists for conversation topics regarding dementia and Down syndrome. It looks at the most relevant issues that arise for siblings and professionals and provides topics that warrant being discussed.

To download, click on image, or access via website

Living%20with%20Dementia-%20DS_Scotland-

Intellectual and Developmental Disabilities and Dementia: Practical Strategies for Professionals

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.

Click on image

McCallion_Dementia_Strategies_Guide_edit
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:

Dementia and People With Intellectual Disabilitieshttp://youtu.be/wrKLURsAy6Y

When People With Developmental Disabilities Agehttp://youtu.be/MEtkmI2xEG8th

Down Syndrome and Dementia (Oak Grove Center) [5 min]: http://youtu.be/Clbg_j2o7tk

A Caregiver's Guide to Alzheimer's Disease  (NTG member  Mary Hogan, MAT)                                                                                      https://www.youtube.com/watch?v=QVA02p-Jhj0

Mac Desktop