Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia

Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Jokinen, J. Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.

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To assist families and organizations in their planning for extended care that accompanies the diagnosis of dementia, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in the United States adopted a set of practice guidelines covering the period from when suspicions are aroused to when care ends with eventual death. These 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. To enable the development of the most appropriate and useful services and care management for adults with intellectual disabilities affected by dementia, the NTG adopted the staging model generally accepted for practice among generic dementia services. The staging model 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. In keeping with the 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) as a first step in documenting early signs of cognitive and functional changes among people with intellectual disabilities. The guidelines also 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.