NTG Publications

FREQUENTLY ASKED QUESTIONS

Frequently Asked Questions (FAQ) -  a series of questions and answers related to intellectual disability and dementia. This publication offers an introduction to intellectual disability and dementia.

MY THINKER'S NOT WORKING

This 42-page summative report is a national strategy for enabling adults with ID affected by Dementia to remain in their community and receive quality supports.

The report offers 20 recommendations for the improvement of services nationally and locally and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer's Research, Care, and Services -- under the National Alzheimer's Project Act. The document reviews the main issue facing adults with intellectual disabilities as they age when they are affected by dementia, as well as their families and provider organizations. The document is composed of 7 sections (Charge and Purpose, The Population, Challenges Facing the Population, Community Services, Education and Training, Financing, and Possible Solutions) and the National Dementia and Intellectual Disabilities Action Plan

GUIDELINES FOR STRUCTURING COMMUNITY CARE AND SUPPORTS FOR PEOPLE WITH ID AFFECTED BY DEMENTIA

 

These guidelines were developed to assist families and organizations in their planning for extended care that accompanies the diagnosis of dementia, The NTG adopted these practice guidelines to cover the period from when suspicions are aroused to when care ends with eventual death. The NTG developed these guidelines and recommendations for provider organizations in developing and providing dementia-related services. The guidelines are drawn from the research literature as well as clinical experiences and demonstrated best practices. The guidelines reflect a staging model generally accepted for practice among generic dementia services. The guidelines employ a staging model which follows the flow from a pre-diagnosis 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 also provide information on early detection and assessment, nonpharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, managing choice and liability, medication use, and nutritional issues.

This is a set of Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities as a framework for the practicing physician who seeks to approach this clinical question practically, thoughtfully, and comprehensively.  The basis for the guidelines is that adults with intellectual disability (ID) are now regularly reaching old age, and are increasingly presenting to their health care providers with concerns related to growing older. One particularly challenging clinical question is related to the evaluation of suspected cognitive decline and potential dementia in older adults with ID, a question that most physicians feel ill-prepared to answer or address. The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) convened a working group to review and formally address this topic, which remains largely underrepresented in the medical literature. 

GUIDELINES FOR EVALUATION AND MANAGEMENT OF DEMENTIA IN ADULTS WITH ID

GUIDELINES FOR DEMENTIA-RELATED HEALTH ADVOCACY FOR ADULTS WITH ID AND DEMENTIA

 

 

These guidelines were developed to help caregivers, whether family members or staff, to prepare for and advocate during health visits. The NTG developed these guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations. With increasing numbers of adults with intellectual disability living into old age the end result is that more such adults are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with intellectual disability are often masked by their lifelong cognitive impairment, combined with the benign effects of aging.  Caregivers need to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia.  It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimer’s disease and related dementias. 

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                           www.the-ntg.org                                                       Edited 8/12/20

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