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Why Do We Need National Guidelines for Adults with Intellectual Disability and Dementia?

Why Do We Need National Guidelines for Adults with Intellectual Disability and Dementia?

Journal article

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
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