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

These guidelines, based on research, clinical experience, and best practices, outline recommended actions for addressing dementia in adults with intellectual disabilities (ID). Structured around the standard dementia staging model, they cover the progression from prediagnosis—recognizing early cognitive decline—through the early, mid, and late stages, highlighting expected behavioral and functional changes. The guidelines recommend using the NTG-Early Detection Screen for Dementia to identify early signs and emphasize nonpharmacological community care options. They also address critical issues such as abuse, financial management, decision-making, liability, medication, and nutrition. This version is adapted for publication in a journal.

Source: Jokinen, N., Janicki, M.P., Keller, S.M., McCallion, P., Force, F.T., and the National Task Group on Intellectual Disabilities and Dementia Practices. Journal of Policy and Practice in Intellectual Disabilities, 2013.