NTG Practice Guidelines

 

Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia

These guidelines were developed to assist organizations and families in their planning for extended care that accompanies the presence of a diagnosis of dementia. The guidelines are drawn from the research literature as well as clinical experiences and demonstrated best practices. The guidelines delineate what actions should be undertaken and are presented in a manner that reflects the progressive nature of prevalent dementias beginning with the pre-diagnosis stage when early recognition of symptoms associated with cognitive decline are recognized and continuing through to the early, mid, and late stages of dementia. In keeping with National Plan to Address Alzheimer's Disease recommendations for earlier and more widespread efforts to detect possible symptoms, the guidelines cite the application of the NTG-Early Detection Screen for Dementia (NTG-EDSD) for use by providers and caregivers to pick up early signs of cognitive and functional changes among people with ID. The guidelines are designed also to provide information on nonpharmacological options for providing community care for persons affected by dementia as well as commentary on abuse, financial, nutrition, liability, and pharmacological issues.

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The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults with Intellectual Disabilities

Adults with intellectual and developmental disabilities (I/DD) 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 I/DD, a question that most physicians feel ill-prepared to answer or address. The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was convened to help formally address this topic, which remains largely underrepresented in the medical literature. The task group, comprised of specialists who work extensively with adults with I/DD, has promulgated the following 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.               

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Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices

To enable caregivers, whether family members or staff, to prepare for and advocate during health visits, the National Task Group on Intellectual Disabilities and Dementia Practices developed a set of guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations. The rationale is that with increasing numbers of adults with intellectual disability are living into old age, and although this indicates the positive effects of improved health care and quality of life, the end result is that more adults with intellectual disabilities 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.  A challenge for caregivers is 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

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